Cliff's Update

Another Round Down

2010-01-15T13:59:00.002-06:00

Finished up all my follow-up appointments for this round with an Oncologist visit on Wednesday and an appointment with the ENT Oncologist on Thursday. Both went well with no surprises to report. That's a good thing.

Dr. Williamson (Oncologist) did give me a little more info on prognosis and life expectancy that I posted about a couple of months ago, though. Not specific numbers but generalities.

With a year and five clean scans behind me he said the prognosis is "much improved" over the initial survival rate they gave me before treatment started. He said each year that goes by without incident the prognosis goes up pretty significantly. While not unheard of, he said it's rare for the cancer to recur after two years of clean scans. Again, no specific statistics but encouraging generalities.

On the life expectancy after a successful 5-years of scans question, he said cancer survivors do have increased risk of contracting other cancers compared to the general population. In my case, lung cancer or esophageal cancer would be the highest risk. The drugs and the radiation do create a somewhat increased risk of heart problems but, overall, he said life expectancy after successful treatment is only slightly reduced from the general population.

So, good news on both fronts.

I now have a follow up with Dr. Tsue (ENT Oncologist) at the end of April then nothing else until July when I'll have my next round of scans and follow-up appointments with everyone. My goal is to get things stretched out far enough that when I go in they don't recognize me and pull out my chart before I check in. Non-recognition, in this case, would be a positive thing.

I'll likely stretch out my postings as well so I can do what I can to get out of Cancer mode and back into normal population mode. Shouldn't be much to report for quite a while any way.

2010-01-08T11:37:00.000-06:00

I got a nice little surprise this morning. I had my latest round of scans Monday morning. My appointment with the Oncologist to go over the results was scheduled for Wednesday but had to be moved to next week because of a business trip. But this morning I had a follow-up with the Radiation Doc and he jumped right in and went over my scan results so I didn't have to wait until next week after all.

Scans were clean. Still Cancer Free.

I think I now go to 6-month cycles for my scans but I do have to wait for next week's Oncologist appointment to confirm that.

I finished several of the "Vital Stim" treatments I mentioned in December. That's electrical stimulation to improve swallowing. I've seen incremental improvement there but not wholesale improvement by any stretch. I have a Video Swallow Study January 19th that will gauge my improvement a little more scientifically than "Cliff's opinion", but I'm expecting the conclusion to be "Oh well, we tried".

Things are going well in general. Struggling to stay warm and to keep my driveway free of snow, but I feel good. Haven't gained any weight back and I still have a limited repertoire at the dinner table, but other than that all's well.

I hope everyone had a good and safe holiday season.

It's December!?!

2009-12-01T21:48:00.004-06:00

Geez, time is flying along. Already December. That's birthday month AND Christmas month here at the Robinson household. With Sophie's addition last December we now have four immediate family birthdays to celebrate plus my sister's.

Life is going along OK. I just started Monday with a new treatment -- to me -- called Vital Stim. I take my lunch with me to KU Med Center, they attach four electrodes to my neck then crank up the amperage and I spread my lunch eating out to an hour while the electricity is stimulating my swallowing muscles. The objective is to improve my swallowing. It won't improve Saliva production or sensitivity to spices or those type problems, but swallowing itself is supposed to get better. Every weekday for 5-6 weeks then we re-evaluate.

Generally continue to do well. I've had another visit with Dr. Tsue since my last post. He said things were progressing as expected from his standpoint. Still tissue swelling in my throat and a few other issues, but he thought I was "on track".

I'd LIKE someone to be able to give me updated prognosis statistics now that I'm a few good scans down the road and things appear to be progressing well but they can't or, at least, don't. The other thing I've been asking is -- pretending all goes well and I don't die from Cancer -- does the fact that I've had Cancer and/or the treatment that I went through have an effect on my general life expectancy? In other words, on average do people who had chemo/radiation treatment but don't die from cancer live as long as the general population? You'd think some grad student somewhere had compiled that type data somewhere but thus far it's eluded me and, as best I can tell, eluded all the docs at KU Med.

Something nice and uplifting to ponder, eh?

Things are going well for me, though. I still have lots of eating problems, I still seem to get tired pretty easily and I take my fair share of naps in the recliner. But overall good. I think I'm going to have to give up on gaining weight -- at least in the short term -- and go buy some smaller waisted pants. Nothing I have seems to fit so I've been tightening up my belt and dealing with it, expecting to grow back into them but that hasn't happened. I am confident that as soon as I buy some smaller pants that I'll promptly gain every pound back but I'm tired of waiting and wearing baggy bottomed pants.

Happy holidays to everyone. Be safe.

Cliff

Four Scans Down

2009-10-15T13:49:00.002-05:00

Got scan results this morning from Monday's scans. Another scan down and still so far, so good.

The scans looked good, I got my seasonal flu shot (H1N1 isn't available yet) and she said I'm looking good from her perspective. We talked about some of my on-going treatment effects with swallowing, dry mouth, sensitivity to spice, etc. She said she's confident those won't return to pre-treatment normal but many people continue to see improvement beyond 10-months where I'm at now.

Next set of scans on January 4th with a Doctor Appt to get results on Jan 6th. I'm trying to set a new record for earliest date in the year that a person maximizes out their insurance for the year. I THINK that I'll go to 6-month intervals after that, but I'll let them call the shots. I recognize I'm probably more qualified to make that decision but I'll let them. I'm trying to build up their confidence.

So, I'll hope for the best on my mouth/throat stuff, pour myself an ice-cold glass of Milk tonight to celebrate todays' scan results and settle back in to my comfort zone for a few months until my next set of scans.

Whoo-Hoo!

Still Progressing

2009-10-12T09:25:00.003-05:00

Dang! A month and a half since my last update! A new record.

It's been relatively uneventful, though. I had a regular ol' annual physical in mid-September. He said everything looked great and just suggested I start taking vitamins. I'd be doing that already except vitamins are -- for some reason -- all horse pills and I can't swallow them. Doc told me I can just crush those up or I can take chewables. You know, like Flintstone Vitamins. That made me feel very young and vital.

He also sent me off for my first ever Colonoscopy! I am 50 now. Did that right at the end of September and actually had a little excitement related to that. He found a lesion that he couldn't remove right then and there. He did take some out for a biopsy -- I hate hearing that. After a few days of hand-wringing that came back negative but I get to schedule another colonoscopy-like procedure to remove it. So I get a double-indoctrination into senior citizen status. Whoo-hoo! That won't be until December, though.

And now, it's time for my next set of scans. I went in just this morning for a Chest CT and a CT of my Neck. I get the results of those scans on Thursday. So just when my anxiety level was returning to normal from the colonoscopy biopsy we get to jump it back up for a few days again. Not quite as anxious as I was in July, though. Not sure why, I'm just not.

Went to Springfield last weekend for a soccer tournament with Tim's school team. Pretty dang cold but we came prepared and it was fun. Stopped at Smith's Restaurant in Bolivar on the way down. Pretty tasty. Open-faced Hot-Beef sandwich with Mashed Potatoes and Gravy and some Blackberry Cobbler for dessert. It took a while to muscle it down but it was tasty. So much so that Jenny let me stop again on the way home. Same dinner but substituted Gooseberry cobbler for dessert.

I told Jenny, that was the first time since I started treatment last year that I think I have truly been full. Not quite a Thanksgiving Dinner level of full but heading that direction. Usually don't have the time or energy to eat enough to get there but it tasted awfully good and Jenny was very patient with me.

I'll update again Thursday or Friday after I get my scan results. Twice in one week! Shoot, just like the old days!

It's been a while

2009-08-31T20:26:00.005-05:00

I was just e-mailing with a friend who's recently been diagnosed with Cancer. I told her how much luck I've had using a blog to keep people informed of my progress and how it's been somewhat therapeutic for me at the same time.

I then realized it's been forever since I've posted anything. I guess I told everyone that's the way it was going to be but who'd have thought I really meant it?

Oh well, I went to the Dentist last week. Just my regular Dentist for a regular check-up. He said everything looks great there. No new problems like I had last time I saw him so I was pleased by that.

Other than that, things just keep on keepin' on. I've seen little to no progress with eating and other local mouth/throat problems. Dry mouth is no better, tongue pain is still hanging around, swallowing is still an issue, any spice at all is still a problem. But I'm really learning to live with all that. We had a weird adjustment period where the family felt bad eating things I couldn't eat and I felt bad about their not eating things I knew they wanted to eat. But we're finding some things that meet both criteria and we're all realizing it's OK for them to have something for dinner that I can't eat and I'll just find something else that I can eat.

I don't want to say we're all just accepting this as my new normal. We're still hoping for progress but if, when the dust settled, this were my new normal I think we could all do OK with it.

Physically I continue to feel great. I don't know how long it will last but my body's still spending a lot of energy healing so I get to eat lots of ice cream and desserts and I'm not gaining a pound -- much to Jenny's dismay. I'm supposed to be gaining a little but not yet. You'll all want to dump your Mrs. Smith's stocks you have about the time I have to slow down on Desserts. I expect they'll notice a significant drop in sales when I quit buying. Right now I've been putting away lots of her frozen pies. They're pretty dang-darn good, though, if you've not tried them. Her blackberry cobbler is particularly tasty. And yes, if you're confused about my desserts and two paragraphs previous when I was telling you about all my eating problems, fruit pie goes down quite nicely.

Still going to the gym regularly. Probably contributing to my lack of weight gain but also contributing to my feeling as good as I have in years. I feel like I could run in the Kansas City Marathon this fall. Not gonna do it, of course, but I feel like I could.

Tim's first Soccer Game was tonight. They won 4-0. I'm looking forward to actually attending soccer matches this year as opposed to just hearing the wrap up like I did last fall.

Next medical appointment is a routine physical Sept 22. Then mid-October will kick of my next round of scans and related appointments. I think I'll enjoy a calm September for a change.

Holding Pattern Now

2009-08-13T13:07:00.003-05:00

Saw Dr. Tsue last week and after his regular poking, prodding and gagging he pronounced me to be progressing on track. He thought my continued swelling inside my throat was semi-typical for 8-months out from treatment. Could be better but it could also be worse.

Dry mouth is an ongoing problem. I had hoped to get into a study that KU Med is participating in but, apparently, the study is closed. So nothing to do there.

Overall, nothing much has changed recently. Local side effects in my throat and mouth continue to linger without much change and, outside my throat and mouth, I feel really good. My only other issue is still occasional fatigue, particularly if I have a project I'm working on around the house. Unfortunately I have quite a backlog of projects around the house. So they're just going a little slowly.

Weight has been pretty stable. I'm weighing in at 170 or 171 lately. That's up a bit from my 165 lb low I had early this year but I'm not exactly packing on the pounds either. I've gotten a rash of "Gawd you look skinny" type comments of late. I've been this size for 8-9 months now, though, so I'm not sure if people just noticed or what. Some have been from people I've not seen in a long time and that's understandable. But from others I don't understand.

One more lymphedema treatment then I go to one treatment every 6-weeks there. I have a dentist appointment in late August and a regular physical in late September. But no more Cancer doctors until October. Whoo-Hoo!

Barring some unexpected new development, it'll probably be a while between blog updates now. As before, I may get some wild hair and stick something out here, but otherwise no news is good news.

Until then . . .

Another One Down

2009-07-24T17:50:00.002-05:00

Went to the Doctor this afternoon and got the results from last week's scan. Another scan down and I'm still cancer free at this point.

I'm not sure why but I had a really bad feeling coming in to today's doctor appointment. No reason in particular other than your imagination of the unknown can be a really bad thing. I went to work today until I had to leave at 2:30 but it was pretty much a waste of a day. Couldn't concentrate on my business. Like I said, I just had a really bad feeling and my mind was busy trying to figure out how we were going to break the news to the kids, how patient my employer was going to be with another round of missed/reduced work, what my treatment options would be, etc., etc. Crazy how your brain works.

So, now I wait a few months for my next round of scans. In the meantime I continue to feel great. I still have dry mouth issues, swallowing issues, super-sensitivity to spice of any kind, etc., etc. But those are things I'm learning to live with and, other than those localized issues, I really do feel as good as I've felt in years. I'm cruisin' around with about 25 fewer pounds and I'm going to the gym pretty regularly. The Seniors Division of the World Body Builders Association hasn't called or anything (yet), but things are pretty good.

I have an appointment with Dr. Tsue the first week of August and have a few more lymphedema treatments remaining, then I'm done with medical folks for a few months other than a regular dental checkup and an annual physical.

We leave Sunday morning for a family shin-dig at Lake Tenkiller in Oklahoma, just east of Muskogee. This marks the 20th year we've gone there with my parents, my brother's family and my sister's family. Four Grandkids has become ten Grandkids and this year we've added a Granddaughter-In-Law (my nephew's new bride) and a Great-Granddaughter (Sophie). Unfortunately my parents aren't able to go this year for the first time in those 20 years. Kinda sad. But we're trying to move on. The kids all really enjoy the trip.

Next Scan will be mid-October. After that another scan in January then we'll go to 6-month spacing for the scans. Looking forward to that.

A Visit from Old Friends

2009-07-13T14:24:00.003-05:00

Dang, as I've reported in recent posts, I thought that I was -- overall -- approaching normalcy again. Yes, I still have plenty of localized issues with my throat and mouth but, outside that part of my body, my energy level was up and I was feeling pretty good.

In an effort to bring me back to earth, the two fine gentlemen Mr. Radiation and Mr. Chemotherapy thought they'd send me a little reminder this past weekend lest I not forget them.

We had some work to do around the house. Mostly inside -- repainting and decorating a room -- but a little outside work to haul some brush and trash up to the dump. Ed and Julie planned to spend most of the weekend at our house helping so we could knock it out.

Friday night went well. We got all the prep work done -- removing chair rails, sanding, washing, priming, etc. I was pretty pooped but we had worked pretty hard so that was to be expected. After sleeping a little later than normal Saturday morning, I did a little work outside to get the stuff hauled to the dump then joined Eddie back with the painting. All was going well until we finished the first coat mid-afternoon and sat down for a bit to let it dry.

It was just like the old days. I hit a wall and couldn't stay awake if my life depended on it. I assumed my familiar position in the recliner and I was out for 2-1/2 hours, despite the youngins' being less than quiet around me. I finally woke up early evening, we ate some dinner and got to work on a second coat and some electrical work. By 10:00 or so I was exhausted again and was out in the recliner again.

Sunday was a bit better as we were putting the finishing touches on. But Sunday evening was still a challenge and I wound up going to bed earlier than I probably should have given a bit of remaining clean-up that we had to do. Sorry Jenny.

We did get done -- thanks mostly to our help from Ed and Julie -- but dang, I'm just not as far along as I thought I was. I thought my trips to the gym and working full days had prepared me for a weekend of manual labor like this but I was sorely mistaken.

On a separate note, I started work back at our downtown office last week. Much different atmosphere, less attractive commute, etc. but I'm still employed, still receiving a paycheck and -- maybe most important right now -- I still have insurance. Getting settled in now and learning the ropes.

Looking forward to my scans on Friday. Looking less forward to getting the results a week from Friday.

7 Months

2009-07-05T07:29:00.002-05:00

Nothing really to report, now. Tomorrow will mark seven months since treatment ended. I think back on all the improvements I've made in that time and how lucky I feel that all my scans have been clean to date. I just hope the progress and the clean scans continue.

Lyphedema treatment continues, though my therapist is on vacation most of this week so I only have one treatment. But that really seems to be helping with my tongue pain, my voice is improving and, visually, I'm starting to see some improvement as well. I don't understand how/why this helps with my tongue pain but it was hurting pretty badly for several weeks and, with no other changes, has improved a lot during the four weeks of treatment. So I guess it's because of the treatment. I won't argue, regardless.

At work I move to the downtown office on Tuesday morning. So tomorrow will be spent packing and Tuesday will be spent unpacking. Should be a fun couple of days.

I go see my Radiation Oncologist on Friday this week and that kicks off this round of Doctor Appointments. Then I have scans the 17th, Dr. Williamson (Oncologist) the 24th and Dr. Tsue August 6th.

I've had lunch a couple of times with Jeff, my treatment partner who's had cancer show up in his lungs. His medication he was taking to slow/stop the growth hasn't done what the doctor wanted it to do. So he's stopped that and is weighing his options with a few different treatment paths. At the same time, he said he feels great right now and, if it weren't for the scans, would have no idea anything were wrong. That along with a great attitude and a strong faith is keeping him going. But keep him and his family in your thoughts and prayers.

Treatments Continue plus Work Changes

2009-06-22T10:06:00.002-05:00

I've now had four Lymphedema treatments with some results. The Therapist is confident I'll see much broader results than I was expecting so I hope she knows what she's talking about. She expects reduced swelling on the outside but also improvements internally that should HELP with swallowing, discomfort, voice quality and pain reduction.

Visually the swelling you can see in my neck has decreased some and my adam's apple is a bit more visible. Tongue pain has decreased pretty dramatically in these two weeks. Unsure how much of that to attribute to the treatments but I'll take it. But, I'm two weekds in to eight weeks of treatment and I'm happy with the early results. Hopefully those will continue.

Had some cost-reduction type changes at work last week. Several people lost their jobs. I'm fortunate enough to still be on the payroll but will be changing positions, moving back to our downtown office from the Grandview office, getting a new boss and serving in a different role. Kinda a stressful situation. But, like I said, I'm fortunate to still be employed so I'm thankful for that.

July will bring about my next tour of Doctor's offices. I'll have appointments with my Radiation Oncologist, my Oncologist and my ENT Oncologist spread out through the month with my next set of scans mixed in there on July 17th. My first appointment after the scans is on July 24th so that's when I'll get those results. Almost 5-weeks away but the suspense is already starting to build. I guess I just have to get used to that but no matter how well previous scans have gone, scans still carry with them a full set of anxiety each time.

That's today's update.

Wedding and a Massage

2009-06-02T13:40:00.002-05:00

Traveling to the thriving metropolis of Eastland, TX this weekend for my nephew's wedding. Should be fun. Six of us -- including a baby and Caitlin who just had surgery on her shoulder last Friday -- all in one car. We're breaking the trip up on the way down so it's not too stressful and so we can all be rested back up on Saturday evening for the wedding. But we're hoping (dreaming) to drive all the way back on Sunday. We'll see. We have a contingency plan if things go awry.

I got the insurance stuff squared away and I WILL be able to have the Lymphedema Therapy. It starts next week. I'm not 100% sure what's involved but it's supposed to help with the swelling I get in my neck. About every third day or so I wake up in the morning with a golf ball just below my jaw or with my neck from my jaw down to my Adam's Apple puffed up. Somewhat cosmetic but also functional with my swallowing. The more isolated golf ball type swelling usually spreads out and dissipates by mid-morning but the more general swelling will be with me most of the day.

So, this treatment is intended to minimize this problem. We'll see.

Another Good Report

2009-05-28T15:10:00.002-05:00

Had my 2-month follow-up with Dr. Tsue today. It was really just a 4-week follow-up since I was in to see his P.A. about 4 weeks ago about my tongue, but we'll go ahead with the 2-month label. Clearly, it's critical that we label it correctly, right?

In any case, he did his normal poking, prodding and sticking stuff down my throat. Afterward he said everything looks good and I'll see you in a couple of months.

Rather uneventful but that's a good thing in my situation.

Dr. Tsue lined me up with a therapist to help with swelling in my neck. A condition called Lymphedema (or Lymphoedema or Lymphodema depending on your source). I'm not sure the treatments will be covered by insurance, though, so we're going to have to wait to get that figured out first. This treatment might get classified as Physical Therapy by the insurance and I've already used up most of my annual allotment of P.T. sessions on my shoulder.

Overall I feel great now. Energy level continues to improve, sleeping is getting better and people keep telling me I look healthier. My throat area is my only area that doesn't feel semi-normal now. Of course, my throat area effects my taste, my swallowing, my voice, mouth pain, lack of saliva, etc. so it's still kinda a pain in the toosh, but I'm generally a lot better off than I was before.

I asked Dr. Tsue about the mouth/throat symptoms. He said they'll continue to improve for another 6-months or so but progress will slow and he doesn't expect any of it to return to pre-treatment normal. So, at some point we'll just have to assume where ever I'm at will be my new normal from there forward. But until then I'll keep hoping for marked improvement.

I've been going to the gym pretty regularly and I'm really feeling pretty good if I could get rid of my mouth and throat. I haven't gained any weight back yet but I expect that's because eating is such a pain I just don't eat all that much. I try, though. Is dessert a food group? I'm pretty good with that.

Whew!

2009-05-05T08:52:00.001-05:00

Just when I thought it was safe to go back in the water . . . or the doctor's office . . . we got a LITTLE scare this past week.

The back-left part of my tongue has been way sore for over a month now. Dr. Tsue said that it was related to the dead bone in my jaw and that it would go away after I recuperated from my surgery a few weeks ago. That didn't happen. My jaw, my teeth, everything else is feeling fine, but not my tongue.

So last Wednesday I went in to see Dr. Tsue's P.A. She said the sore on my tongue was bigger than it was at the time of surgery. She didn't expect anything to come of it but wanted to do a biopsy to make sure. That biopsy word just scares the crap out of me these days.

In any case, she cut a couple of pieces of tissue out (which was a joy all by itself) and sent them off to the lab for a biopsy.

As I told Jenny, I've not been too worried about this. After all, she said she didn't expect anything. But I'll tell you, when you actually get on the phone with her to get the results, your heart rate goes way up regardless how cool you are. And you all know how cool I am, right? The next few seconds could bring good news or they could bring devastating news.

Well, to cut to the chase, the results were negative. Still no Cancer. She said she's not 100% sure what's going on but I'm supposed to continue with my 4-times-a-day rinse and I already have a follow-up appointment with Dr. Tsue in late May so he'll assess progress at that point.

So, I can relax again.

Well, sorta.

Hardware Free

2009-04-23T13:50:00.002-05:00

Sorry ladies, no bare-chested photos to gawk at this time around.

Everything went well with removal of my PEG Tube and Port yesterday. I was a little sore last night and that's continued today but not a big deal. For the short term the lump on my chest and the tube sticking out of my stomach have been replaced with several layers of gauze taped on in those same locations, but those will just last a few days then I'll get back to normal. Only other restrictions? No heavy lifting and no swimming for 7 to 10 days. Not clear how I'm going to get by without being able to do those but I'll just have to find a way.

I saw my Orthopedic Doc this morning. I still have some work to do with strengthening but, basically, I'm done with Doctors and Physical Therapists as far as my shoulder are concerned. Plenty of exercises to do on my own at home to maintain my range of motion and to improve my strength, but all stuff I can do on my own.

So, I'm not really sure what to do. As of today I have no Doctor Appointments, scans or anything else medical on my schedule until May 28th. After that my next appointment is out in July. I'm sure my poor car is going to have withdrawals, not knowing what to do without two or three appointments to drive to each week. I'm confident we'll be able to work through it, though.

Along with the decrease in Doctor Appointments, you can also expect a decrease in posts to this blog. Barring something unexpected, I shouldn't have anything new to report for quite some time. My May appointment is just a follow-up with Dr. Tsue (ENT) and my next set of scans isn't until July. I'm sure I'll get a periodic wild hare and post something, but don't expect too much meaningful content before July. Much like my car, I'm confident you'll all be experiencing withdrawals.

Put Your Shirt On!!

2009-04-21T21:36:00.004-05:00

Alright, kinda out there on this one, showing off my non-sculpted body. But tomorrow's the day I get my PEG Tube and Port removed. I can't wait.

As you can see the PEG Tube -- the white dangly thing hangin' out of my stomach -- is not exactly a hot, sexy look. And it's always there, in the way, getting caught on my shirt when I move, etc., etc.

I think you can see the lump on my upper-right chest. That's my Port. If you were looking in person or if this were a higher resolution picture you could trace the path of the tube that runs under my skin from the port to an artery in my neck. Again, a hot, sexy look.

But, tomorrow this stuff's all gone. I'll be able to lay on my stomach again, I won't have to worry about the PEG when I'm taking off a shirt, and on and on.

It's Official!

2009-04-14T14:03:00.003-05:00

OK, got biopsy results yesterday from last week's surgery and saw my Oncologist this morning to get final Scan Results. Everything was clean.

For the time being, at least, I've nary a cancer cell in my body.

Of course, I have to do this for another 4-1/2 years to really say this is behind me, but this good, thorough set of scans, biopsies and Dr. Tsue's check-up last week gets me off to a strong start for getting through those 4-1/2 years unscathed.

Dr. Williamson wasn't too optimistic about some of my other symptoms -- dry mouth and swallowing problems in particular -- getting much better than they are right now. Those might just be a fact of life from here forward. He's more confident about the fatigue. But that's all side issues today. The lead story today is the scan results and biopsy results. And that was all good.

Also was able to tentatively schedule removal of my Feeding Tube and I.V. Port for next Wednesday (Apr 22). Looking forward to getting all that hardware out of me, particularly the Feeding Tube. Another step in the direction of normalcy.

So it's a good day today at the Robinson household.

Back Home and Feeling Good

2009-04-07T15:39:00.002-05:00

Had my scans yesterday and surgery today.

Dr. Tsue scraped out the dead bone from my lower left jaw. No reconstruction or anything like that required at this point. If it heals up the way he thinks it will this will be behind us for the time being at least. Dying bone is an on-going risk after radiation treatments.

While he was in there and had me asleep he did a pretty thorough examination of my throat, esophagus, larynx and all points in between. He took tissue out from a few different spots to run a biopsy on, though he said everything looked good and he doesn't expect anything to come of the biopsies.

He had only preliminary results from yesterday's CT and PET scans but said those both looked good. He said there were some hot spots in my throat from the PET Scan but those looked to be the result of the continued healing from Radiation rather than any cancer.

I'll get biopsy results from today's surgery early next week and I see my oncologist next Tuesday and he'll have final scan results to review with me including the pictures themselves.

So, I'm in a pretty good mood right now. Tentatively optimistic now, reserving the real celebrations for next week after I get all the final stuff.

But, a "Yippee!" is still in order.

Back on Track

2009-04-03T09:15:00.002-05:00

OK, after 150,000 phone calls and some help from my H.R. folks, I think we're back on track for everything.

Scans will be Monday afternoon. There was some concern if this would give Dr. Tsue enough time to review the scans and plan his approach to Tuesday's procedure but, as of yesterday afternoon, he tells me to come on in Tuesday and we'll get it done. So, Monday and Tuesday will be pretty busy but, by the end of the day Tuesday, I'll be right where I was planning to be all along. And I'll then have my follow up appointment with my Oncologist the following Tuesday, April 14th.

Quick post today but thought I'd let everyone know.

Kinda Grouchy

2009-03-31T16:07:00.002-05:00

In a nutshell, my scans schedule for tomorrow morning have been canceled. Got a call from the Oncologist's office and they've not received pre-certification from my insurance company. I tried to call the insurance to explain the situation -- i.e. A) we're talking about Cancer and B) I have three follow up appointments that are all tied to these scans tomorrow. Pretty much I got a response that sounded a LOT like "our policy is that our nurses have up to 15 days to approve procedures". And you should use a tone that reeks of "I don't care" when reading the response.

Butler changed Insurance Providers this year so this is new. Our previous Provider approved stuff like this near instantaneously. And from talking to the Doctor's office, it sounds like that's what they're used to.

Particularly annoying? These scans were scheduled on February 24th. 5+ weeks before the procedure. But the Doctor's office waited until late last week to request Pre-Certification. Since they usually get near immediate approval they wait until 3-4 days before a procedure. If they pre-certify "too early" then there's a risk the procedure will have to be changed or cancelled.

All in all, I'm fit to be tied. I've griped at the insurance company, I've griped at the Doctor's office and I've griped at Butler's H.R. Department. But the scans will now be delayed. Not sure about the impact on my other appointments. I guess we'll see about that when the dust settles on the insurance. I already have a call in to Dr. Tsue's office to see if they have a similar problem with pre-certification for my "surgery" next week, though that may need to be moved any way if he wants the scans before the surgery.

Not my most uplifting post, I must say. But have a nice day.

Appointments Coming Up

2009-03-29T18:10:00.002-05:00

I saw my orthopedic surgeon who worked on my shoulder last year. He was pleased with my progress. We still have some work to do with getting strength back but it's progressing. I continue with Physical Therapy but we'll cut down to once-a-week and focus on strength, mostly stuff I can also do at home.

This Wednesday (Apr 1) I have my next round of scans. I arrive first thing in the morning, go to the lab for lab work then head up to radiology for a CT Scan and a PET Scan. It's not clear when I'll get the results of the scans. I have a few appointments over the next few weeks.

On Friday I have my regular follow-up appt with Dr. Wang, my Radiation Oncologist. I'm sure he'll have scan results available to him but I don't THINK that's part of his repertoire. We'll see.

The following Tuesday (Apr 7) is when I have my procedure with Dr. Tsue where he'll scrape out the dead bone in my jaw and do some investigative work in my throat while he has me there and asleep. I'm assuming we'll get some feedback from him on the scans and on what he did/didn't see in my throat.

Then on Tuesday, April 14th I have my follow-up appointment with Dr. Williamson, my Oncologist. I'll CERTAINLY get a full report from him that will include the scans, Dr. Tsue's findings, Biopsy Results if Dr. Tsue removes some tissue to check, etc. So by then I'll have a good, complete picture of where we're at with the whole Cancer thing.

So, I'll have a bit of an anxious next couple of weeks.

I had lunch with Jeff last week, my fellow patient who's found his cancer has spread to his lungs. He's doing great under the circumstances with a great attitude about the whole situation and a strong faith to help him through. He's on a medication now that's intended to slow or stop the growth of the cancer. He won't know until late May how effective it's been and if that will just be his ongoing treatment for the rest of his life of if they'll try something different. Please say a prayer for Jeff and his family.

Jeff helps me to keep my anxiety in perspective.

Fix-A-Jaw

2009-03-15T13:00:00.002-05:00

Went to the Dentist a couple of weeks ago for my first post-treatment cleaning and check-up. Coincidentally I had started having some gum and tooth pain in and around the furthest back tooth on the lower left side.

Scott checked it out and said he suspected some of the bone in my jaw had died and was sluffing off through the gum, causing the sore that's there and the general pain in the area. He sent me down to my Oncologist/ENT at KU Med Center to get it checked out and I had that appointment on Thursday. Things have continued getting more and more sore over the last couple of weeks and, by the time I saw Dr. Tsue my tooth was very sore, the inner gum is very sore and the underneath side of my tongue back in that area is REALLY sore. It's made eating more of a challenge than it already was.

Dr. Tsue did his normal examination -- stick tubes down your throat through your nose, stick his hands half way to my stomach through my mouth and poke and prod on all the sore areas to see where it is and isn't sensitive. Not fun.

Afterward he suggested a quick surgical procedure. I get knocked out for the festivities, he scrapes the dead bone out and, while he's in there and I'm asleep, he'll do some thorough investigating in my throat, maybe even remove some tissue for testing, to make sure all is well and none of the Cancer has returned in that area. That little bit of fun is scheduled for April 7th and will come on the heels of my Pet Scan and CT Scan on April 1st. So, once we get through all that we'll have a real good picture of where we are with the whole cancer thing at this point in the process.

In the meantime I have some mouth rinse I get to use 4-times a day to keep the area with the open sore clean and free of infection.

Other than this exciting new development with my jaw bone everything else is just continuing on. I still fall asleep most evenings before anyone else and wake up before anyone else in the morning. I have started going to the gym and getting a little exercise. Mostly just walk on the treadmill and lift very light weights. Nothing above my head, though, because of my shoulder. I'm not really stretching the limits on the exercise, taking it slowly instead, but it feels good to get a little exercise and it gets my blood flowing.

Eating has been a bit of a struggle lately. Between dry mouth and my swallowing I've not made a ton of progress. Tastes seem to be improving a bit but swallowing and sensitivity to spice hasn't.

Dry mouth, in addition to contributing to my eating problems, has been a real pain all by itself. I wake up every morning with my tongue cemented to the top of my mouth and the sides of my throat stuck together. Interestingly, drinking water doesn't really help that much. I pretty much carry a water bottle around 24/7 to sip on, but some milk occassionally seems to help more than anything. That doesn't seem right but I'm not asking questions.

Fellow patient Jeff did, in fact, find out the nodules in his lungs were cancerous. He was given a few treatment options and opted for a daily chemo-pill treatment that doesn't carry as many side effects as some of the other options. He started those last week so throw some happy thoughts his direction these next few weeks. He and Rhonda need them.

So, that's the update for now. Between now and early April all I have is Physical Therapy for my shoulder -- which is improving in leaps and bounds -- and a follow up appointment with my Orthopedic Surgeon for my shoulder. So, there may not be tons of updates over the next few weeks unless something changes. But, who knows, maybe I'll get bored some morning when I wake up at 4:00 or 5:00 and I'll throw something out here.

SLC and Home

2009-03-04T23:53:00.002-06:00

Well, made it to Salt Lake City yesterday and back home today. Yesterday was my biggest worry. I got way tired as the day went on but made it through all the mandatory meetings and site visits. My travel partner, Rich, was very accommodating on dinner. We made a quick visit to Arby's -- Tim would be jealous -- so I could get back to the Hotel and go to bed. Yes, I went to bed at 7:00. I then woke up at 4:00 but felt pretty good at that point. Read for a while then got going for the day.

Since we got finished up yesterday, today was just a matter of going to the airport and flying home. Made it home about 4:45 but I think my family has been kind enough to share their Flu with me. I went to bed right when I got home and slept until about 10:30 tonight. Not feeling very well now and will be going back to bed shortly, but thought a quick update might be in order.

I had my swallow study on Monday and that went well. Still things to work on but she said to just keep eating and swallowing and things should continue to improve for several months. Unfortunately she also said that improvement will continue but will probably NOT return to pre-treatment "normal".

Other than that, not much to report. Obviously fatigue is still a problem. Taste and spices are still problems when eating. And dry mouth continues causing it's own set of problems with no miracle cures discovered to date.

That's all to throw out there for now. Time to go back to bed.

February Closes Out

2009-02-28T08:31:00.002-06:00

Well, things just continue plodding along. Nothing spectacular but I'm continuing to make progress in most areas. Dry mouth is the only thing that's going the wrong direction but it's gone pretty far south and is a pretty good inconvenience.

I had a few appointments this week. First was the Nurse Practitioner at the Oncologist's office. She said I'm progressing as expected. She gave me a prescription for some pills that I take 3-times per day that are supposed to help with the dry mouth. I haven't been able to remember to take them 3-times in any one day yet so I can't exactly say if they're going to be a help or not. We scheduled my next round of scans which will included a CT Scan and a PET Scan for April 1st. No snickers from the wise acres out there about scheduling this on April Fools' Day. I then have an appointment with Dr. Tsue (ENT) on April 2nd, with the Radiation Oncologist on April 3rd and, again with the Oncologist in mid-April.

Eating continues to move along. Still problems with spicy food, my tastes are still screwed up and I still struggle a bit with swallowing some things and get choked some, but all are progressing some I think. I've managed to gain 4 lbs in the last month so she was ready to schedule a date to have my PEG Tube removed. Then we talked and decided it would be prudent to wait until AFTER the PET & CT Scan . . . just in case. Not that I'm not carrying around a positive attitude but we also have to be practical. But, if I get a clean set of scans April 1st then I'll be getting my PEG tube removed sometime in late April I expect. Looking forward to that.

On Wednesday I had a check-up with my regular dentist. He's a family friend and knew the whole history here. So he gave me a thorough once over. Dental problems are common after Radiation treatment to the face/neck area because of all the problems the treatment causes to the bone structure, the saliva glands, etc. I've been using my flouride trays for 30-minutes a day most days, brushing immediately after everything I eat -- often 4-5 times a day -- and flossing pretty religiously, all of which I'm supposed to do the rest of my life. He gave me a general clean bill of health but I do have a sore low down on the inner gum next to my furthest back lower tooth. I assumed it was the flouride tray rubbing and causing irritation. Scott said it COULD be that be he suspects there's an infection in the tooth that's making it's way out through the gum there and causing the sore. My tooth and jaw are sore in the same area. So I have some extra mouth-rinse stuff to use a couple of times a day then go back in to see him late next week to see how it's doing. Hopefully that will get it fixed up, though I've seen no progress in these first few days.

And finally, Thursday was my follow-up appointment with my Orthopedic Surgeon for my shoulder. I got glowing reports there. Making light-years progress since my appointment a month ago. Still a lot of strengthening that needs to be done -- I couldn't lift a can of coke above my head right now -- but my range of motion has improved dramatically and is near normal. That was the concern. Strength will come when it comes, range of motion CAN be lost forever but, apparently, not for me this time. So, I continue with my physical therapy for four more weeks then go back to see him again.

Monday I go in to see my Speech/Swallow Pathologist and to have a Swallow Study to see how I'm progressing on that front. I feel like I'm doing much better. Again, I still choke some and have some problems, but I can swallow pills now and I'm not really shying away from anything from a swallowing stand point, I just have to be careful. We'll see how that goes.

Then, Tuesday and Wednesday I'm off to Salt Lake City for a business trip. I'm a little concerned about that for fatigue. Tuesday, in particular, will be interesting with an early morning flight then an afternoon spent going around to look at job sites and back to the office for some meetings. Hopefully I won't fall asleep mid-meeting.

So March will be a couple of Physical Therapy sessions a week plus one Doctor Appt with my Orthopedic Surgeon. April will have a flurry of appointments the first few days then a couple more spread out in the month. And if all goes well, Doctor appointments will start being few and far between after that. I'm sure my boss is looking forward to that.

My buddy and fellow patient Jeff had his lung biopsy Wednesday. Of course, since everything's so non-stressful for him right now, he had a bit of a complication with the procedure itself. His lung didn't reinflate properly and he had to spend the night Wednesday night. He came home Thursday afternoon and now has a stressful several days waiting until late next week for the results. Keep him and his family in your thoughts and prayers if you would.

Progress Continues

2009-02-19T09:42:00.002-06:00

It's been nine days since my last post. For the most part, no news is good news as far as my personal progress.

Dry Mouth is getting to be a bigger and bigger deal. Partially because it seems to be getting worse and also because the other stuff is getting better. But it's really a pain while sleeping and while eating.

Eating is going very well over all. I'm eating lots of different stuff, including bread and rice occasionally that were both on my "not supposed to eat" list. I've always been a bad boy, ya know. Anything that's remotely spicy gives me lots of problems. I've not been able to nail down a specific ingredient(s) that set me off, but my mouth really lights up at the slightest hint of spice. So Mexican food and Barbecue, two of my favs in the past, have to wait a while. Haven't tried a steak, pork chops or heavier meats like that. And I still have occasional choking spells and frequent throat clearing during meals, but that's improving as well. And I'm to the point I can swallow pills. So I've not used my feeding tube at all for about two weeks now. Very pleased.

The dry mouth thing makes most of my meals take WAY longer than everyone else. Ed and Julie invited us over for dinner the other night. Grilled Chicken, baked potatoes, Mac & Cheese and Salad. The Mac & Cheese went down easily. The rest of the meal took me about an hour. Literally. One medium chicken breast, a good sized baked potato and a small salad. Everyone else was done and the dishes were done before I finished.

Of course, I did get out of helping with the dishes but I'd gladly trade that off with a non-marathon length meal.

Still falling asleep between 8 and 9 O'Clock most nights. Did that after dinner at Ed and Julie's. Did that last night with company over at the house. It just hits me hard and it's like I've been drugged or something and I couldn't stay awake if I wanted. Doing better with fatigue during the day. Still can't do much, physically, but I'm getting better.

Mucositis has gotten a lot better. Still a bit of a problem when I wake up in the morning but not much during the day. Mouth/Tongue pain is still there. It causes me to not be able to do some things all of you take for granted but it's getting better and is manageable.

My Physical Therapy for my shoulder has worked miracles. It's still pretty weak but we're working on that. I have something approaching full range of motion now, though, with minimal pain or discomfort. Strength has improved to the point I can do about anything without help from my other hand as long as I don't have a significant weight in my hand. So I can reach for things or put dishes away in the cabinets, but if whatever I'm lifting weighs more than a pound or two, it gets difficult. But it's SOOOOOO much better than it was a few weeks ago, I'm elated.

And last, I'd like to ask each of you to send some happy thoughts in the direction of fellow Cancer patient Jeff. Jeff had a nearly identical case to mine. Stage 4 tonsil cancer with some involvement of the lymph nodes in his neck. We went through the same treatment regimen, starting and ending on the same day. And he and Rhonda have been great and supportive as we've talked back and forth while both families are trying to get back to normal. Unfortunately they found out recently that Jeff appears to have Cancerous Nodules in his lungs. He has a biopsy next Wednesday to confirm the PET Scan results, but the doctors are pretty confident. As you can imagine, that's tough news to swallow so please keep Jeff, Rhonda and their two kids in your thoughts and prayers.

Feelin' Stronger Every Day!

2009-02-10T15:23:00.003-06:00

Again, like the Oliver heading, you can sing the tune while you're reading the heading.

With a week-and-a-half of eating under my belt, I'm feeling much improved in that same time. I'm not sure if it's because I've been eating again, because I'm getting a little exercise with my shoulder physical therapy, because I'm 2-months out from treatment and I should be getting better or what. But I really seem to have made a big jump recently in how I feel.

Eating itself is going better than anticipated. I continue experimenting with different foods to see what I can/can't swallow well and what does/doesn't taste good. My tastes are still pretty screwed up and several things that I've always liked or even loved just don't taste good to me now. Hopefully that's short lived.

I'm still sleepy at night and don't stay up late very well. And I've still got some throat issues that cause me sleeping problems, swallowing problems and others, but all that's improving and, overall, this last week or so has seen my biggest improvement by a long shot.

I turned half-a-century yesterday. 50-years-old now. We did very little to celebrate - my idea. Jenny really wanted to do something significant to mark the occasion but you don't plan things like that the week before the event. But three or four weeks ago when she probably needed to plan some kind of shindig, we had no idea how I was going to feel. In fact, even with my recent improvements I wouldn't have felt much like a party. So we'll try something in a month or so after I'm feeling better and just pretend it's my birthday.

Now, the real objective given the events of the last five months is to celebrate birthday number 55. When I celebrate that milestone I'll also be able to celebrate 5-years of cancer-free life which is the milestone for considering yourself "cured".

Now that I said above how much better I'm doing, one thing has really gotten worse during that same timeframe. Dry mouth. My mouth is a desert lately. At night the swelling in my throat and sinus area has turned me into a mouth breather while I sleep and, dang, it's amazing when I wake up. My tongue is STUCK to the top of my mouth and/or the back of my throat. Can hardly release it. During the day things aren't quite as bad but I really need to keep a water around. I've been using a gum and a gel product that help some but are hardly miracle cures. Just something I'm gonna have to get used to, I suppose.

A couple of tidbits before I close. 1) Sophie is awfully dang-darn cute and 2) Mizzou basketball boys whipped up on KU last night. Well, "whipped up" might be a little strong. They won with a shot at the buzzer after trailing for 39 of the 40 minutes in the game. But they won, that was the point!! Nice of them on my birthday, eh?

One Week of Food

2009-02-05T11:47:00.003-06:00

It's been wonderful these last several days getting back into eating. I've been experimenting at every meal to see what works well and what doesn't. I'm certainly not off eating whatever I want but I have enough options that I've been pretty happy.

I apparently still have some issues with at least some spices. I had some corn/onion/other stuff salsa that I ate with a spoon and I thought it was pretty hot. I was getting beads of sweat on my forehead. A few days later I thought the same thing about some baked beans I had from Price Chopper. Spicy beans at Price Chopper didn't make sense so I asked Jenny and she informed me that neither the beans nor the salsa was spicy at all to her. So something's going on there.

I've had a few things that haven't gone well because of taste or difficulty swallowing, but for the most part, if I don't get crazy trying to eat something I have no business even trying, everything's gone well. Soups go down well and taste good. Oatmeal works well for breakfast. Most fruits work as long as I chew them up really well. Macaroni and Cheese was good. Actually had some fried chicken that worked well as long as I peeled off the skin and crispy stuff and took small bites.

So I'm getting back in the eating groove slowly but surely. Fellow patient Ron who had the same treatment regimen I had except that he was six weeks ahead of me on schedule got his feeding tube removed last week. I can't imagine being ready for that five weeks from now. I'm still relying on my feeding tube a fair amount and right now at least couldn't swallow a pill if I had to.

But we'll see. I have my next Swallow Study on March 2nd so maybe I'll surprise myself.

I've also scheduled my first business trip since treatment. Just a 2-day trip to Salt Lake City the first week of March. I'm a little leary. If I made that trip today I'd be absolutely exhausted by the time I flew out there that I'd be out of commission that afternoon to do anything. Hopefully Mr. Fatigue will be kind to me between now and then.

So things are progressing. I'm still pretty tired. Mucositis actually seems to be making progress. Dry mouth is now becoming a bigger problem so I have to sip water a lot and I'm going to try some gum designed especially for dry mouth. So I'll need to experiment with that. Sleep seems to be improving. I still wake up between 5:00 and 5:30 but that's OK. All in all, progress seems to be coming quicker all the sudden. Maybe it's psychological because I'm eating now. Who knows.

It's a shame Ben's tied up at training without Internet Access and can't read this. Because Mizzou beat Texas last night -- IN AUSTIN! Nice win for the boys in Black and Gold.

Correction: Ben DOES have internet access I see from his comments to my last post. So, enjoy the Mizzou win, then.

Food, Glorious Food!

2009-01-30T23:16:00.003-06:00

While reading the Headline, add some music to it, imagine some orphans dancing around and do what I couldn't do with a canned Blog-Website. You go, Oliver!

OK, relevance. I visited the Speech/Swallow Therapist today. I came away with authorization to get back in the eating game. I still have a somewhat limited playbook -- I'm supposed to stay away from heavy meat, breads, things that separate when you eat them (like rice) and I have to be careful with mixed-consistency foods like, for example, chicken-noodle soup where you have a thin broth together with noodles and chicken chunks. When I do eat, I need to have a glass of water handy to help wash stuff down and she suggest lots of sauces and gravy. Other than that, it's pretty much anything I want. I'm supposed to experiment, blend things up in the blender if needed, and try to eat something three times a day.

I'm PSYCHED!!

I jumped right in tonight and had a good sized bowl of clam chowder. It went down pretty darn well, tasted good and got my courage up so I continued on and had two Chocolate Chip Cookies for dessert. Homemade Chocolate Chip Cookies, pretty fresh out of the oven.

Jenny and I had talked about going out for Mexican and I'd try a bean burritto or, maybe, Huevos Rancheros. But our Mexican Food buddies, Liz and Keith, were working at a Pancake Dinner fundraiser at school so we decided to wait until Saturday instead. What's up with a Pancake Dinner? I asked them that a few weeks ago when they told me about it. They weren't sure but, apparently, it's a successful fundraiser so who cares.

It's 11:30 and I've not been asleep yet. This is a new record I believe. We checked out Legends of the Fall and watched it with Emily and Tim. Good movie. Little bit of a downer, I suppose, but still watchable. Brad Pitt is almost as good looking in the role as I probably would have been.

Mini-Update

2009-01-27T13:03:00.003-06:00

Now that we're past all the exciting stuff with Video Swallow Tests and CT Scans I don't have nearly as much to report now.

I do have an appointment tomorrow afternoon with my Orthopedic Surgeon who worked on my shoulder last August to see if we can't get that moving along again now that I'm feeling better and I have a new set of Physical Therapy visits available with my insurance. On Friday I have my follow-up with the Speech/Swallow therapist to see if I'm making progress on that front and what to do to continue making progress.

Sleep stuff does seem to be coming around a bit. I'm still awfully tired in the evenings and fall asleep mid-evening if I haven't squeezed in a nap or something. But I'm making myself get up for a bit before, then, going to sleep for real. Get up around 10:00-ish, "eat", attempt a little family communication, read a little, whatever. Just stay up for a while before going right back to sleep. That's helped and I'm usually able to then sleep until 5:00 or 6:00. I've also managed a nap a couple of times so that I could go to Tim's soccer game late at night or watch a show I wanted to watch. That's had kinda the same effect. Eventually go to bed and sleep until 5:00 or 6:00. Not bad, particularly on weekdays, but I still wouldn't mind sleeping a little later on weekends.

Hopefully I'll get permission to start eating at my session on Friday. Food is just looking and smelling REALLY good right now and it's getting harder and harder to just go over to the kitchen sink, get out my syringe and pump a couple of cans of formula into my feeding tube. Yes, I'm no longer hungry but it's hardly satisfying. Just something you gotta do like brush your teeth or change the oil in your car. I've been doing my silly tongue exercises, though, so hopefully this will change soon.

Having said that, I'm pretty sure Jenny likes the idea that I can't eat. Shoot, we can go out to dinner and it doesn't cost nearly as much as it used to now that I just get water. Just kidding, of course. She's cheering me along like she has been the last several months.

Last bit of whining -- I hate this mucositis thing. The doctors keep saying "the secretions should improve over the coming weeks/months" and it all sounds real clinical and good. But the fact is it's a pain in the rear end, it's gross, it's uncomfortable, it makes me talk funny, it causes me to sleep in a recliner and I STILL wake up choking or gagging a lot. I'm really ready for that to be done.

That mucositis is really my only true complaint. Well, that and the fatigue thing. Those are really the only things. Kinda lucky, aren't I? I supposed you could throw the non-eating in there also but, no kidding, that's the only three things I have to complain about at this point. Except for the pain at the base of my tongue, I mean. Other than those four things, everything's hunky-dory. . . . .

Caity was home last weekend and we all had some good family time. Purchased Wii Fit and got it set up. I'm confident that will allow me to re-sculpt this skeletal physique into Greek God stature in no time. Now, if I can just quit losing weight maybe I can get started on that endeavor.

I've been asked so I'll just throw it out there. I'm cartin' around about 165 lbs right now. I can't remember the last time I weighed 165. Eighth grade, maybe?

Geez, didn't I say at the beginning I didn't have much to report?

Still Good News

2009-01-23T22:43:00.003-06:00

Friday's appointment went well also. They reviewed the scan results briefly but we had already done that with Dr. Tsue on Thursday and they didn't really have much to add. It looks good.

So my Thursday and Friday appointments that I was so worried about went off about as well as can be expected. They told me today that we'll do another CT Scan along with a PET Scan in three months -- late April. I haven't actually scheduled those yet but will at my follow-up appointment with the Oncologist Feb 24th.

Other than that we talked about lingering side effects of the treatment -- fatigue, mucositis, eating (or not), tongue pain, etc. He said these are all normal and will continue to improve over the coming weeks/months. He said some people have these last as long as 6 months so I guess I just need to be patient.

He did do some lab work today to check my Thyroid just to make sure that's not contributing to my fatigue. Frankly, he doesn't think it is but is checking just to be sure.

Along those lines, we went over to my brother's house tonight for a birthday celebration for two of his 150 kids. There was a house full of people there with visitors from my sister-in-law's side of the family as well. Plenty of noise with the kids playing and everyone talking. Guess who fell sound asleep in the recliner at 7:00. No, not Sophie. Cliff! Geez, how embarassing.

Why Wait!

2009-01-22T11:27:00.004-06:00

Alright, I received a much more thorough review of my CT Scan this morning from Dr. Tsue and his Resident than I was expecting. So, I know I said I wouldn't be posting again until Friday but thought I'd go ahead today any way.

Bottom line, everything looks as good as can be expected at this point. There's still some swelling in my throat, a couple of my lymph nodes are still larger than "normal", but they said that all that is a reaction to the treatment. After reviewing the CT Scan, poking and prodding me and sticking things down my throat through my nose, they pronounced me in as good a shape as can be expected at this point.

Granted, they can't do a PET Scan yet, my left tonsil is still somewhat larger than my right and there's those couple of Lymph Nodes, so nothing's a lock or anything, but they were very positive about what they saw and certainly left me feeling pretty good.

So good news so far. Now, if I can just convince my oncologist to be as upbeat tomorrow I'll be feeling really good.

I did lose another 4 lbs since my last visit. Not a good thing. Me and my skeleton physique need to start eating.

Gettin' Nervous

2009-01-21T15:45:00.002-06:00

OK, not a big deal. It's just that in the next 48 hours I'll get bits and pieces of information that will dramatically affect my prognosis from here forward.

I know, this is "just" a CT Scan, not the more comprehensive PET Scan. But they can't do a PET Scan yet so this CT Scan is my first feedback to let me know if the treatment worked or not. If you get out of the gate with clean scans after treatment -- this CT Scan and, later, the PET Scan -- the prognosis goes way up compared to if these scans come back with signs of lingering Cancer.

So, yeah, I'm pretty nervous.

My first appointment is with Dr. Tsue tomorrow morning. Like I said a few days ago, I THINK he'll only review part of the CT Results. I'll then get a more detailed review at my oncologist appointment on Friday afternoon. Not sure why that is but that's the way I understand it's going to play out.

My sleep continues to be a problem. Wonder why?

But I REALLY struggle to stay up past 8:00 or so then wake up in the middle of the night some time. Sometimes it's 5-ish hours of sleep. Sometimes it's a little more. But sleeping from 8:00 until 3:00 am is still not right. I've got to break the cycle somehow but, honestly, when 8:00-ish gets here it's lights out, no matter where I am or what I'm doing. Jenny and I are trying to figure this out but without success to date.

Tongue and face exercises are going well, I guess. Not sure what to expect in what time frame. Mucositis and fatigue are really my two biggest problems right now. Not eating is a close 3rd right behind them but that's an inconvenience and doesn't REALLY interfere with my life like the other two are.

I probably won't post again until Friday afternoon or evening once I have all my results in from my CT Scans. That's unless Dr. Tsue surprises me tomorrow morning and gives me the complete rundown.

Infomercial Expert

2009-01-19T03:30:00.004-06:00

Here we go again. Another sleepless night. Worst night yet in this recent bout of insomnia.

Went to sleep around 9:30-ish last night but woke up about 1:00 and haven't been back to sleep yet. I'm not sure if I'm worrying about scan results or what. I'm sure that's at least contributing. But it's also not like I'm sitting here fretting or anything, either. I just can't sleep.

I did see a couple of keen get-rich-quick infomercials this time. If I had just put the time to productive use instead of idly watching the commercials I'm sure I could be a billionaire by now. What was I thinking. Shoot, I could be making $10,000/month right out of the gate just working in my spare time. I'd say 1:00 am to 4:00 am qualifies as spare time, wouldn't you? I guess I just need to quit being such a slug.

My mucositis has seemingly gotten worse in the last several days rather than better. Everything else seems to be making slow but sure progress, but not the mucositis. That's likely contributing to my lack of sleep as much as anything. I wake up with tons-o-crap in my mouth and throat and it's difficult to clear out. Enough detail there. But I'm really ready for that to be over.

Oh well, I'll go gargle and see if I can't get myself to a point of being able to breath clearly without gagging then see if I can't get back to sleep. I'm sure I'd have no trouble sleeping at work on Monday -- if I chose to, of course.

Sleep, Sleep, Sleep

2009-01-18T05:46:00.002-06:00

Not sure what's happened but I've suddenly started my up in the middle of the night thing again. This is a few nights in a row, now.

For a while I was falling asleep mid-evening and waking up at 3:00 or so in the morning. Last night I stayed up with the family to watch Shawshank Redemption -- great movie -- and went to sleep around 10:30 or 11:00. But then woke up around 4:00. I do feel up to date on all the latest break through products like the Monster 1200 Steam Cleaner, ShamWow towels and, of course, the Back2Life pain relief system. Infomercials are great in the middle of the night.

I have my Doctor Appointments coming up Thursday and Friday. I'm getting more and more anxious as time goes on. Fellow patient Jeff who also had Tonsil Cancer and received identical treatments on the same schedule as I did had his scans a couple of weeks ago. When he went in for his follow up appointments he only got partial CT Results from Dr. Tsue. Dr. Tsue only reviewed the part directly effecting the neck and throat then his oncologist reviewed more complete results including the chest. Point is, it will probably be Friday before I really know any thing.

I don't want to wish my life away or anything, but geez, I'd really like Friday to hurry up and get here. I'm pretty confident my being awake in the middle of the night is related to my anticipation.

Quite the Social Butterfly!

2009-01-17T03:49:00.003-06:00

Jenny and I went to dinner tonight with our good friends Liz and Keith. Of course, my version of "dinner" at this point is still ordering a glass of water -- no ice -- and sipping it while everyone else eats. But it's still good to get out and pretend.

We invited them back over to our place to hang out, maybe play some cards. Unfortunately, after we got home I foolishly broke out my new electric warming throw. It's an absolutely marvelous invention. It's an electric blanket but in the size of a throw that you put over you while sitting in a chair and watching T.V. Hey, it's been cold and Mr. No Bodyfat here just needed a few minutes under the throw to warm back up. This, as I'm sure you've already figured out, translated to my being a marvelous host and immediately falling dead asleep. This was about 8:00 I think, though I'm really not sure.

Probably would have happened without the throw as well but I'm pretty sure that sealed the deal. I just get Sooooooo tired still.

Not even sure what time they left but I'm confident L&K are anxious for another night out with the Robinsons. Ugh! And now I'm awake here at 4:00 posting on this site. I think Sophie's sleeping habits are closer to what they're supposed to be than mine are right now. Feels like I might be able to go back to sleep here in a few minutes, though. We'll see.

ixnay on the oodfay

2009-01-14T12:28:00.003-06:00

Well completed my CT Scan and my Swallow Study this morning. Nothing to report on the CT Scan at this point. But the swallow study had some surprises.

First, after doing the swallowing she "reviewed the game tapes" with me -- ok, she showed me the video of me swallowing. That's pretty cool by itself.

But that allowed her to show me all the things I'm doing wrong when swallowing now. And there were several. Some were related to swelling that still exists and some were related to muscles that aren't doing what they're supposed to be doing because of pain, the radiation and/or inactivity.

I have a group of exercises I get to start doing several times a day designed to start improving my swallowing and my speech. So if you see me driving and I'm sticking out my tongue or making silly faces, don't laugh, just recognize that I'm doing my exercises.

The biggest surprise, and disappointment, was her recommendation that I NOT eat anything for a couple of weeks at a minimum. Apparently I'm not getting my airway closed off very well when I swallow and she said I'm at pretty high risk for aspirating food.

So my gameplan for trying something every day to get back in the groove of eating and to stimulate my taste buds is now down the drain. I guess I continue on with my feeding tube for the foreseeable future. Bummer.

Gourmet Cliff!

2009-01-13T14:26:00.002-06:00

True to my word from yesterday's post, I've decided to try eating something every day just to get the old chew-and-swallow thing working again and to see if I can't stimulate my taste buds.

This morning I ate a scrambled egg and at lunch today I had some applesauce.

Quite an athlete, I'd say!!

Neither the egg nor the sauce went down that well. Don't get me wrong, I got them both down, but it was work. I've seen Tim eat in seconds -- and only a few -- what I ate in minutes but who cares at this point. I ATE!!

So what if neither really tasted that good. So what if I had to wash both down with a lot of water in order to get them down. So what if I got choked a bit during both efforts. It's progress.

Now I'm on for my CT Scan and Swallow Study tomorrow morning. I'm sure today's crash-studying effort will pay dividends in tomorrow's Swallow Test. Yes, I know, they call it a Swallow "study", but I know a test when I see it. And even with today's swallowing historics I'm not sure I'm going to pass tomorrow. In fact, I'm pretty sure I'm NOT going to pass. Although I'm not sure what passing would accomplish.

Oh well, the important thing for the day is I've been reintroduced to food and, while the relationship is a bit strained because of extended separation, I'm confident we'll be able to mend our fences and once again have a mutually enjoyable relationship.

Might take a while, though.

Scan Coming

2009-01-12T14:00:00.003-06:00

Well, I have a week of work under my belt. 4-5 hours is about my limit. I was there about 6-1/2 hours last Thursday and it about wore me out. But it's good to be working again and getting out of the house for something other than a Doctor Appointment or Treatment.

We did get my scan and follow up Doctor Appointments scheduled. I have a CT Scan and a Swallow Study on Wednesday (Jan 14) morning. This is the first step in determining if last fall's Hell was successful in getting rid of all the cancer. That's the CT Scan, not the Swallow Study. The Swallow Study is just a test to see how my swallowing is doing. I'm expecting to fail that miserably. But the CT Scan's the important one. I was expecting a PET Scan also but, apparently, you can't do a PET Scan until at least 3-4 months after treatment. Because the body is still healing from the treatment a PET Scan will show false positives until it's finished healing. But a clean CT Scan would be a good start.

Unfortunately I then have to wait over a week to get results of the Scan. I have an appointment with Dr. Tsue, the ENT, on Thursday, Jan 22 and with my Oncologist on Friday, Jan 23. So, by then I'll know the results.

Still not eating anything. I've decided -- just today -- that I HAVE to start trying something every day. Just to get my chewing muscles, my swallowing muscles, and all working and, we've just heard recently, that if you stimulate your taste buds with something they'll recover faster also. I don't know how true that is but it's worth a try. Besides, I might stumble onto some things I can eat comfortably.

I drove myself to work today. Friday night I just said -- what the heck -- and I quit taking pain meds. With those out of my system over the weekend I was free to drive. Tim and I have some negotiating to do as he was pretty comfy with "his own" car at his disposal. But we'll work that out.

The lack of pain meds has gone OK. There's certainly been some mouth/tongue/throat discomfort, though not as much as I was expecting. Probably my biggest impact has been my shoulders. Yes, remember that I had shoulder surgery in late August and had Shingles or something that caused problems with my other shoulder in late October. I guess the pain meds had been masking some of that pain but now it's back. I've still got a fair amount of rehab to do on my right shoulder from surgery that I've procrastinated because of both the cancer treatment and some stupid Insurance restrictions on Physical Therapy. But I'll be getting back in to Therapy soon and hopefully we'll get that taken care of.

Caity left to go back to school yesterday. Kinda emotional. Just her second semester so it's not "the norm" to have her gone yet. Plus Caity's going to miss her new niece that she's pretty partial to and I think she's worried about my scans. But I talked to her this morning after her first two classes and I'm sure she'll do great.

Enough for today. I need to rest so I can go watch Tim's soccer game(s) tonight. I've missed way too much of the kids' stuff the last few months.

Back to Work!!

2009-01-06T15:51:00.002-06:00

It's Tuesday now. Two days of work under my belt.

Neither were full days. Both were about 5-hours, arriving late but leaving early to make up for it. I think that's about the right length for a work day right now, though. I'm able to make it through my shortened day without too much problem but, by the time it's over, I'm pretty exhausted. Monday I slept ALMOST the full trip home with Emily as my Chauffeur.

I can't drive yet because of the pain meds. I'm making progress with them but not as fast as I'd like. But I've more than cut them in half from where I was three weeks ago. Probably down to about a third of where I was so we're getting there. Just not fast enough. I want to drive.

Caitlin, Emily and Jenny have been my Chauffeurs, though, so far. Tim also came along for the ride Monday morning with me and Caitlin so it's been a full family affair. Sophie even came with Emily when she was my driver.

No word from the Docs yet on dates for my Scans and follow-up visits. I tried to call them this morning but didn't have any luck finding someone to talk to and left voicemail that hasn't been returned.

Not much progress to report on eating, mouth pain or mucositis. Things are really moving slowly. Even when I think back to how things were last week I still don't see a lot of difference. Energy level is the area I've seemed to progress the most but, with two days of working all the sudden, it's hard to compare that fairly.

Again, I just have to be patient. That's just not my strong suit.

Uneventful Doctor Visits

2009-01-02T22:17:00.003-06:00

Visited my Radiation Doc and my Oncologist today for follow-up visits. Both were relatively uneventful. Generally, I'm progressing as they expect me to. Both told me to be patient and let time heal all wounds, literally.

My mouth is still pretty sore, the Mucositis continues to be gross and a pain in the butt, I get choked once or twice a day, I'm still eating near exclusively with my feeding tube and I'm tired most of the time but getting more energy.

My Oncologist said that he actually thinks I'm ahead of the curve on my recovery. A bit better than "average". So, I guess that's good news but it doesn't help my lack of patience. I'm trying to taper my pain meds. Pain meds are the only thing standing between me and driving. So I'm trying to find a balance between getting off pain meds ASAP but avoiding too much discomfort in the process.

We were going to schedule my follow-up scans and a video swallow test today but the people who do the scheduling were out of the office today. So they'll coordinate that on Monday and call me with the schedule for those tests, my follow-up visit with Dr. Tsue to review the results and my follow-up with my Oncologist. These should all be happening the week of January 12 or, possibly, the week of January 19.

I did successfully eat a bowl of tomato soup the other day and a dollop of Mashed Potatoes on New Year's Eve. The tomato soup was made with water instead of my preferred milk and I didn't use any crackers like I would have like to, but it was a start. Took me quite a while to eat a mere bowl of soup and it wasn't my most satisfying meal I've ever had, but it was my first non-feeding tube food in two months.

Sophie's doing well. Quite likely the cutest baby I've ever seen (except for my own kids, of course) and, while we're only 11 days into her life, she really is the best behaved baby I've ever seen. Hardly cries and is easy to settle down if she does cry. She's sleeping well at night. Just a sweet little girl.

I know I sound like a broken record with the update on how I'm feeling. But things just aren't changing that quickly. Certainly not as quickly as I'd like. But, I guess several "updates" in a row with little to no change from the previous is still updating you on where I'm at.

Happy New Year to everyone. We're looking forward to a healthy 2009. Certainly a healthier 2009 than 2008.

What Time is It?

2008-12-28T02:05:00.002-06:00

Saturday night/Sunday morning now.

Alice, Ron and Jessica came over this evening. Being the host that I am, I fell asleep in the recliner about 8:00. I woke up about 12:30 with everyone gone and just the family here. Pretty much the norm, unfortunately. Just can hardly stay awake past 8:00 or 9:00 no matter where I am or what's going on around me.

Tonight that's translated into being pretty much awake here at 2:00 am. Sophie happens to be awake also but is eating now and we hope will be asleep again in a few minutes.

Progress continues on the health front. Obviously the fatigue thing still has some work to do. When I'm awake I have more energy than I used to but I'm still pretty tired most of the time.

Mouth pain continues to improve. I'm SLOWLY cutting back on my pain meds. The worst pain occurs when I yawn. Unfortunately that seems to happen quite a bit. Refer to previous paragraph about fatigue.

Mucositis continues to be a problem. I'm ready for this to be done. Very little progress, if any, on this front.

Still not eating anything at all by mouth. I tried some Jello the other day. MILD problems swallowing but the biggest issue is that nothing tastes good. On the more foolish front, I tried a small bite of a small piece of candy yesterday. It was there, it looked really good, so I bit off a small piece. Mistake. It tasted terrible and the pain was pretty fun just trying to do a little bit of chewing and, then, trying to get the chocolate and coconut out of my teeth. Any future food experiments will be on such daring items as jello or oatmeal. Something requiring no chewing whatsoever. Once I have those mastered we'll see about graduating to something requiring a little bit of chewing.

All in all, making progress but, still, not as fast as my impatient self would like. I'm really getting the urge to eat but my taste buds -- not to mention my pain levels -- just aren't ready.

Sophie and Emily are home now and trying to create some routine. Not really there yet but she's only a few days old so there's time.

Christmas Day at the Hospital

2008-12-25T15:05:00.002-06:00

Spending Christmas Day at the hospital with Emily and Sophie. I'm feeling pretty decent today. But I'm not the subject of today's post. Today I needed to get a picture posted of the new Granddaughter. Quite a cutie!!

Christmas Eve Update

2008-12-24T07:39:00.002-06:00

Well, it's been a few days but -- not my fault this time. For some reason I've been having trouble logging in to the site to post updates. Not sure if the problem was on my end or theirs but it seems to be corrected now and that's good because I have lots to update on.

First, I think I'm making noticeable improvements now. It's not obvious from a day-to-day perspective but I no longer have to look a week into the past to be able to tell differences between how I feel now and how I felt then. I can just look back two or three days and be able to notice differences.

My energy level seems to be going up, though I still seem to crash about 8:00 every evening no matter where I am and no matter what's going on around me. I've amazed myself with what I can sleep through. But during the day I'm able to get up out of my recliner and actually do a few productive things around the house. Still need to sit and take frequent breaks and could still use a mid-day nap, but it's a lot better than it was.

I'm not planning any speeches or important presentations any time soon, but I can talk so much better than I could and with minimal discomfort. Still no lengthy conversations and I still struggle to talk loudly if needed, but it's all about progress.

Mouth pain, particularly my tongue, is still ever present and I'm still suckin' down pain meds at an uncomfortable rate, but I've started backing off on the meds a LITTLE bit and the pain is starting to approach manageable. I ate some jello the other day. It went fine from a pain standpoint but tasted awful so I'm not sure how close we are on the food front. Other than that jello, I'm still 100% feeding tube for food. I still can't swallow any pills -- even my teeny-tiny pain pills -- so I'm not back by any stretch but making progress.

Mucositis is getting better as well. It's still there. I still get gagged/choked occassionally. I still have to carry around my stupid "spit cup" as we call it. But it's no longer a non-stop, disgusting "gag and spit" fest like it has been. I can sit through a dinner -- even at a restaurant -- and discretely manage the problem without ruining everyone's appetite around me. And this one's a big deal for me, personally, because this has been something I've been very self-conscious about.

And, finally, I don't want to confuse issues here in this one blog, but I can't get through an update without mentioning that I'M A GRANDPA!!! That's right, in case you didn't already know it, my 23-year-old daughter was pregnant and, now, is the proud mama of a baby girl. Sophie Layne was born yesterday late afternoon, weighing in at 7 lbs, 3 oz and measuring 19-3/4" long. We have plenty of pictures but none on this computer so I'll get a picture posted later today or tomorrow. Again, don't want to throw too many issues into this one blog but I had to mention this one 'cause it's kinda a big deal.

Have a Merry Christmas and a safe Holiday Season.

Progress

2008-12-20T11:12:00.002-06:00

I haven't had any 'break through' days where I wake up and suddenly feel better than I did the day before. But as I sit and think about how I feel today compare to how I remember feeling several days ago, I do think I'm making some progress.

Mouth sores, Mucositis, fatigue, etc. are all still real problems, no doubt, but compared to how I felt last weekend I definitely have more energy and the Mucositis problems not as significant as they were at that time. I'm not running out to eat a hot spicy Mexican meal or anything, but my mouth isn't AS sore as it was last weekend. I don't want to spend hours chatting with anyone, but I can carry on a moderate length phone conversation now without TOO much difficulty.

So, it's coming in small steps that are hardly recognizable from day to day, but over the course of several days I can start to see that things are slowly getting better.

I saw the P.A. at the Oncologist's office on Thursday. She said things seemed "normal" to her. I don't go in to see any doctors again until January 2. On that day I'll see the Radiation Doctor and the Oncologist. At the Oncologist appointment I'll schedule my scans to see if all this treatment was successful. The scans will happen in mid-January and I'll have a follow-up appointment with one of the Docs shortly afterward to review the results.

So, two weeks until my next appointment and four-ish weeks until I have my scans. Looks like it will mostly be just waiting and letting time heal me for the short term. Hopefully the progress will continue. Shoot, I wouldn't even mind if it sped up a bit.

Plodding Along

2008-12-16T03:58:00.003-06:00

Dang, it's suddenly been a week since my last post. Not sure why but such is life.

Progress is MUCH slower than I was hoping for now that treatments have ended. I saw my Oncologist last Wednesday for a weekly check-in type visit. They said I look to be doing as expected and I need to temper my optimism a bit. Say what!?! I came in thinking that within a couple of weeks of ending treatments that I'd start to see some meaningful progress. They said that COULD happen but it could also be 3-4 more weeks before I even BEGIN to see any progress at all.

Current status, though. I continue to be extremely tired, though that's the one area I feel I have made a little bit of progress. The sores in my mouth and throat and, in particular, on my tongue are just too painful to describe. I've had a bit of an internal philosophical debate over pain medication. I'm generally not a big fan of huge volumes of medications but, I'll tell you, I'm taking a lot of pain meds and it's still pretty sore. The doc just tells me to keep bumping it up until I'm comfortable (within reason) but the level it would take to get there is just beyond my comfort level on other fronts -- not to mention, then, the side effects of the pain meds start kicking in.

Talking is difficult. The sore throat makes it hard in the first place but, more than that, the sores on my tongue make it difficult to enunciate. I know it's a struggle for those around me to understand me. Phone conversations are a whole problem of their own.

Mucositis continues to hang around with all its lovely symptoms. Pretty gross and disgusting. Enough said on that front.

Like I said, fatigue levels are incrementally better, I think. Still spending lots of time in my recliner but I did work up the energy to go to the basement over the weekend and watch Jenny and a couple of friends work on some stuff on our basement. You may laugh, but that really is an improvement over my previous energy level.

I have my weekly appointment in the Oncologist's office Wednesday. Hopefully they'll be a bit more optimistic this week than they were last. I'm really hoping to dip into something at the Christmas Dinner Table. Just nine days away, though, and today I can't imagine putting anything at all into my mouth.

Week's Progressing

2008-12-09T20:58:00.002-06:00

Tuesday night, now. The week's progressing but I'm not sure I am.

Ed and Julie invited us over for Taco's and a Movie last night. I had no plans at all for the Tacos, of course. That was Tim's department. But I did plan to visit a bit and watch a movie, enjoying the chance to get out of the house. I shouldn't have bothered. I felt absolutely horrible all evening and just crashed in their recliner instead of my own, coughing, gagging and spitting for their enjoyment instead of just my own families.

I am feeling incrementally better today. Actually, my mouth, throat and the mucositis is probably worse today, but my body doesn't feel quite as overall crappy. I've had glimpses of energy. Played a few rounds of Wii Golf with my mother-in-law and got her addicted to the world of Nintendo. I think she's anxious for a rematch tomorrow.

Sleep's been pretty scant just because of the mouth pain and the coughing and gagging. I'll nod off for 20-30 minutes then wake up coughing and/or gagging. Spend a few minutes getting things under control, nod off again, and continue the routine until it's time to get up in the morning. Not exactly a restful night.

My hands and feet are making progress. In fact, my feet are fine now. My hands don't hurt quite as bad now but they're still pretty sore. They're adding in itching as a symptom, though. I not sure how you "scratch" painful skin but I'm trying to figure it out. Tons and tons of lotion.

Enough complaining for the day. I know I sound like a broken record but I'm trying to get something down to document how this is unfolding -- for my own future reference as well as your current info. Fingers crossed for accelerated progress over the next few days.

Over but it Ain't Over

2008-12-07T13:17:00.003-06:00

Got my pump off yesterday for the last time. So all the logistics of treatments and chemo are done. But right now I feel a long way from celebrating and recognize that we've still got a long way to go.

Last night I spent the evening vegitating in the recliner and just kept feeling worse as the evening went on. I'm sure part of that had to do with Mizzou's abysmal performance in the Big 12 Championship Game, but most of all I just plain don't feel good. The Doctor called as a follow-up from my visit last week to tell me my culture tested positive for a Staph Infection. Not sure how much that's contributing but I just feel bad. In addition my mouth and throat are doing their on-going thing and this mucositis thing is not only disgusting but painful and a regular source of difficult gagging. My hands have decided again, to swell, peel, get red and to hurt like heck. Only this time my feet have joined in on the fun so walking is almost as much fun as buttoning my shirt or opening a prescription bottle.

No real Nausea. I've had a little vomiting but I think it was because of coughing and gagging rather than nausea. We're keeping an eye on it, though, and won't mess around it if we see any sign of nausea that might be getting me into trouble.

Feeling incrementally better today. I was hoping for more progress but I know I'm going to have to be patient.

Last Day of Radiation!!

2008-12-05T12:05:00.002-06:00

Today's my last day of Radiation Treatment. I've already gone to my morning session so I have just the afternoon session remaining. Tomorrow, then, I get my 5FU Pump off for the last time then I'll be done with treatment.

No dancing or celebrating going on, though. Since my good day I had on Tuesday, things have gone downhill. There's been little nausea and no vomiting, though, so I have that to be thankful for. But fatigue levels are way high, my mouth, tongue and throat are plenty sore and I'll not get into the grossness involved with everything that's going on.

Had an Appointment yesterday with the Physician's Assistant at the Oncologist's office. She spent a good bit of time trying to manage my expectations for the coming weeks. Told me not to expect to get feeling much better too soon. She said it COULD be 4-5 weeks before I make significant progress on the feeling better front. Geez, I hope not. I've been counting on eating SOMETHING at Christmas Dinner. At least Mashed Potatoes and Gravy or something like that.

I guess time will tell.

Wow, Good Day Today

2008-12-02T11:44:00.002-06:00

Not sure where this came from but I'm feeling better today than I have in two or three weeks. Certainly my mouth, tongue, throat and gums feel pretty sore, but I don't think quite as bad as they have been. The congestion and gagging that's caused me so many problems and grossed everyone around me out is doing OK today. But most of all, I have a little energy today and my overall body doesn't really feel sick like it has the last few weeks.

Man, all the crappy days really make me appreciate a day like today.

Tomorrow is my "normal" day to start feeling the effects of the chemo drugs from this week's treatment. If you recall, last cycle it kicked in on Wednesday like it always does but really hit me hard and went downhill from there, resulting in a Hospital stay over the weekend. Planning to do everything to avoid that this time around. So if it starts rearing it's ugly head in a serious way like it did last time, Jenny and I will waste no time getting my little behind down to the Cancer Center for some fluids and I.V. Nausea Drugs.

But that's tomorrow's problem. Today, I'm just enjoying the day.

Yet another confusing Monday

2008-12-02T03:34:00.005-06:00

Monday is the day I go to the Cancer Center to get my 5FU pump installed then go to the Radiation Center for a Radiation Treatment. I then return to the Cancer Center to receive a different Chemo drug via I.V. drip and from there I'm ready to do whatever I want until my 3:45 Radiation treatment. Sometimes we go home, sometimes we go to the Plaza, whatever. It depends on how I'm feeling and what the weather looks like.

But EVERY Monday -- and this was my fifth and final Monday -- there's be some kind of screw-up. On nurse thought I was supposed to receive the Pump AND the chemo I.V. drop before going to my 1st radiation treatment of the day. Another time they were running a little behind so they thought we should just head on down for Radiation then come back and they'd do the pump and the I.V. Chemo then. Stuff like that. But this Monday took the cake.

We arrived at our usual 7:30 only to find they didn't have me on the schedule at all. I was nowhere to be found. But to do anything that morning they needed two things -- an open bed and orders from the doctor. They weren't awash in optimism on either front but I waited. About 8:45 they instructed us to go on over the Radiation for my first treatment then come back and we'd get all the chemo drugs going between Radiation treatments. Dr. Williamson said we'd ignore, for one treatment, that the 5FU pump is SUPPOSED to be installed before any radiation treatments because it tends to enhance the effectiveness.

When we returned from Radiation -- which was a half-hour late themselves -- and our weekly Monday Morning chat with Dr. Wang from Radiation -- it was about 11:15. We go into a room after a few minutes, the Nurse Assistant came in and took Vital Signs. Finally, about noon, a nurse came in to take some blood to send down to the lab. This is something they COULD have done and certainly should have done in the morning before my first treatment. Because they have to analyze the labwork before they can do anything with the I.V. drugs. They need to make sure that, chemically, my body is able to handle the "invasion" of the chemo drugs.

About 1:30 they had the lab report. Lots of stuff is lower than the "normal" range but the decision is that it's OK so off we go. 30-minutes of pre-meds to get me ready, an injection of Benadryl to help with Nausea -- and to zonk me out -- then, finally, the 30-minute I.V. drip of the Chemo Drugs themselves. All the Normal Routine, just on a way different schedule.

You can run the numbers, that would, on paper finish us up about 2:30. With the normal starts and stops and the time to switch and re-hook the backs, we were actually done about 2:45. With no time to go home and my still feeling pretty groggy from the Benedryl, they told we could just stay for and extra 45-minutes and I can crash in their recliner while Pat reads her steamy romance novel then just get up and go straight to radiation for my 3:45 appointment.

So that was the plan. We went to radiation, they were relatively on schedule, and by 4:10 we finally ended to day and headed home.

We did talk to the folks in Dr. Williamson's office to see what could have happened. Apparently they schedule all these appointments at the very beginning of treatment. Infact, in her book, she showed Pat (Pat went to talk while I was getting treatments) where the appoint for this morning was booked back on October 6th, my first day of treatment. However, to keep those appointments, they must confirm the the week before.

Well, the week before, when I was supposed to have my appointment with Dr. Williamson's office, I was in the Hospital. Since I was getting lab-work done there, I was getting a thorough examination, even saw Dr. Williamson himself for a brief period, no one saw a need to have an additional appointment with Dr. Williamson in the next day or two before Thanksgiving. That was A.O.K. with me. The only thing no one thought about, apparently, is that visit is normally when they go through my upcoming schedule and confirm any pending appointments that need it. So I was out of sight and out of mind and no one confirmed to appointments so they were dropped.

What a pain. In general, we've be EXTREMELY pleased with the whole treatment process. The facilities, the people, the competent people, etc., etc. all the way down the line. But Monday's are a consistent problem and I think we're go need to have a heart to heart with them.

But, this is the LAST TIME we'll need to deal with a Monday!! From here forward, I get to sleep in -- to the extent I can -- do some work from home as capable then, before too long, go back to work as a productive member of society. I certainly WON'T be farting around with who's going where, when are they going and what's gonna happen when they get there like I have been the last several weeks.

Pill swallowing is getting more and more difficult. I physically can't swallow my Chemo pill. It's a pretty good sized capsule but gets stuck at top of my throat. I can still breath but I can feel it there and it just won't go down. Eventually I'll cough it back up and have to spit it out. A similar thing happens with a couple of other pills. Both are smaller than the Hydrea and are, apparently, right on the border of pill sizes I can/can't swallow. Everything else is small than these two and they all go down well while these two pills are a crap shoot. Sometimes they go down, about half the time they get stuck like the hydrea.

So, for the Hydrea capsules they told us we can break open the capsule, disolve the contents in warm water then take it via the feeding tube. So, I've been doing that with the Hydrea. Unfortunately the other two have time-release features that won't allow that so I'm just continuing to take those by mouth and doing my best. Fortunately neither are crisis if I can't get full two pills down every morning and evening. So I just do what I can.

This being my last week of treatment means, also, that it's December already. Where has time gone? We borrowed a small Christmas tree from my Brother. My little nest with my recliner, TV Tray with all my easily accessible books, puzzle books, bills to review, iPod, electronic yatzee, etc., etc. is right by my recliner. And there's no other logical place to move all this without excluding me to some remote corner of the basement or something like that. Unfortunately my nest location is the normal Christmas Tree location. So, we pondered the situation and Jenny decided I should keep my nest and we'll look for alternatives for the tree. Low and behold Ed and Julie came through with a pretty decent looking, just smaller tree that will work quit well. So one crisis solved. Remaining Christmas Decorating is going to be a challenge. Long story on that and we won't get into it here.

I hope everyone had a great and safe Thanksgiving break last week and I'll talk to you soon.

P.S. - Wow, that wound up much longer than expected. Sorry.

And, they make the last turn . . . and here they are . . . on the home stretch . . .

2008-11-30T06:41:00.004-06:00

The last two weeks have, generally, been pretty rough. Last weekend we had the whole puking/hospital thing that was miserable. We got that cleared up and it hasn't returned, fortunately, but my lips/tongue/cheeks/throat are REALLY having a tough time this week with, I presume, the radiation. Throw in yet another fine case of Thrush on top of those sores and it makes for a mouth that can hardly do anything.

Certainly no eating, but that's not new, but it's elevated to difficulties drinking just water, swallowing pills. Talking is almost impossible above a whisper and even that hurts my tongue to enunciate the words.

Jenny found me an old 6" x 8" or so dry erase board with it's own carrying case for markers and something to erase. I carry that around but it's still a pain. I went to my brother's yesterday and forgot it so my nephew loaned me his MagnaDoodle. It worked pretty well.

So, it's with this apprehension that I enter my final week of treatment. Tonight I get to take my first Chemo pill then tomorrow we're back down to K.U. for treatments.

It's getting late in the overall process so I've gotten lots of the expected question along the lines of "so how quick do you bounce back after treatments are over?"

I really don't know the answer to that. Hopefully we'll do a better job this week than last in staying on top on the nausea. Which would mean that piece should be relatively behind my pretty soon after treatment. But the fatigue, mouth pain, throat pain, skin pain, mucousy congestion, etc. could linger for quite some time. No idea when I'll be able to start eating again. Ron, who was in my same treatment but had started 6-weeks earlier -- so finished 6-weeks earlier -- got started eating slowly after a couple of weeks. But his wife cautioned to ease into it. Every Doctor/Nurse I talk to tells me that every patient is different. I believe it.

So really, we'll just have to see. My goal is to eat SOMETHING by mouth at Christmas dinner. It might just be a helping of Mashed Potatoes but I plan to eat something. That would be almost 3-weeks after my last treatment so I think that's a pretty conservative goal. Regardless, that would be an improvement over Thanksgiving where I got to visit with everyone while they ate, but no eating for myself.

Well, I'd better go get started with my Sunday. I've got a pile of pills waiting for me on the counter.

2008-11-27T07:46:00.002-06:00

Well, it's Thursday morning. Thanksgiving morning.

As usual, I'm up before the rest of the crew. In fact I've been up for quite a while. Sleep hasn't been very friendly with me of late. It leaves me nodding off in the middle of conversations, TV Shows, or whatever goes on during the day.

The nausea and vomiting that hit me last weekend appears to be fully behind me for this round of treatment. The Radiation effects have been kicking in the last couple of days -- sore mouth, sore tongue, sore throat, thick, mucousy saliva, nose bleeds/sores, etc. My neck, amazingly though, is not nearly as bad as it was earlier in the whole treatment. The skin's tight, sensitive in areas, etc. but nothing like it was when I posted the "Red Neck" picture.

My boss stopped by the house yesterday to say hi and drop off a "care package" from the folks at work. It was good to talk to him and get updates on everything at the office. He told me I looked a lot better than he was expecting me to have looked. I think that was a complement. But when he left Jenny and I had to look at each other and breath a sigh of relief. Sorry, but with the economy the way it is and the things I see happening to friends around me at their jobs, the thought had creeped its way into both of our heads that Dave was stopping by to let me know about something bad -- they were laying me off, they were closing the Research Center, whatever. In fact, it was just a friendly visit -- and a good one at that -- but Mr. Imagination can really mess with your head if you let him.

So this being Thanksgiving, I at first glance feel very little to be Thankful for. But a quick look beyond the obvious negative things that are going on in my life unveil plenty of positive things to genuinely be thankful for. Having a competent Cancer Treatment Center so close, a job with good insurance coverage, a supportive family, supportive friends, etc., etc. The list could get pretty lengthy. So yes, I have cancer and I feel like crap 24-7 lately, but in the grand scheme of things, there's plenty to be thankful for and, I suppose, taking a moment to recognize that is what today's all about.

One more week of treatment remaining. That will get the logistical issue of driving back and forth to KU twice a day out of the way but that ending of treatment will just be the beginning of the getting better process. Like everything, I'm told it varies from person to person but I should expect 2-weeks from the end of treatments before I START feeling better and, from there, it will just be a gradual process. I'm certainly anxious to get the treatments done but I'm even more anxious to begin feeling better again. Just not sure yet how long I have to wait for that.

Enough for today. We're heading over to my Brother's to hang out today for Thanksgiving. I'm a little unsure how the day's going to go. We'll just play it by ear and react as needed. Have a great day today.

WOW! What a Weekend

2008-11-24T20:06:00.003-06:00

I'm sure you all remember from when you were reading my Saturday morning post (as opposed to the Saturday Evening Post) so intently how I said that I had had a rough week but was feeling better, in no immediate danger of throwing up any more.

Couldn't have been more wrong!

In fact, the vomiting continued shortly after my post and continued on. When I went to have my pump removed that morning they kept us for a few hours to pump in some fluids and some I.V. anti-nausea drugs. She told us I'd be feeling like a new person in a couple of hours.

Couldn't have been more wrong II!

The vomiting continued on all afternoon and evening. Every two or three hours. And I'm sure you can imagine how much fun that was when you really have nothing in your stomach to throw up. After that continued Saturday night, I called the doc Sunday morning. He called in a new prescription to try and said that should clear things up in a couple of hours.

Couldn't have been more wrong III!

When that didn't work I called him back again and he told me to come down to KU to be admitted. So, off we went. At this point -- according to Jenny -- I had uttered all of three, maybe four words and, according to Tim, spent a bunch of time moaning and groaning over the previous 48 hours. So we spent an exciting afternoon, evening and night at K.U. Med Center. They pumped in four liters of fluid and a host of different anti-nausea and steroid drugs. Finally, somewhere around midnight, they did something right and the vomiting finally stopped.

After I got through the night without vomiting, I got to eat a little bit Monday morning. When I held that down I got to eat a little more (we're talking feeding tube eating). And finally, by mid-afternoon I was feeling pretty OK. When the doctor came in mid-afternoon to discuss if they should release me or not, I kinda had to talk them into letting me go. Not a big stretch or anything, but they were contemplating keeping me another night for observation. But I'm not taking any big risks or anything by having come home. And, I know where they're at if something goes awry.

The BEST part of the conversation with the doc -- really -- was that the doctor apologized for they're letting me get as sick as I was. He said that never should have happened and they should have been more on top of things. He said this won't happen next time. That's what was the best part -- not the apology. Although the apology didn't suck or anything either.

Jenny and I certainly weren't excited about my being sick, but we really thought -- hey, I have cancer, I'm talking Chemo, I'm gonna be sick. Instead, we now know what to watch for and, if things start going bad next time, I know what to do so, hopefully, this won't happen again.

But, feeling much better tonight. Hopefully things will stay that way.

Week 4 Winding Down -- Thank Gawd!

2008-11-22T07:16:00.004-06:00

I get my pump off in a few hours and I'll be done with week 4 -- none too soon. This has been a rough, rough week. Been kinda wierd, though.

Since Wednesday afternoon when the Chemo Drugs kicked in, I've felt horrible. During the day I feel horrible, I sleep a lot and just kinda lay around. But evening comes and, for some reason, things go way down hill.

Every evening I got to feeling worse then the vomiting kicks in -- and then I really start feeling bad. Tim's girlfriend was over Thursday night. I'm guessing she'll not be anxious to return after the show I put on.

Trying to stay hydrated but that's a challenge as well. It was on two different sets of scales so I'm not sure how accurate it was but, in theory, I lost 8 lbs between Tuesday morning and Friday morning. I could believe it, though.

But, this morning leaves me feeling bad but, I think, in little danger of vomiting. So hopefully I can get the pump off and get enough of this crap out of my system that I'll be done with the puking for the week.

I know, I'm sure I drive lots of you crazy with all these pleasant, upbeat posts like this. But sorry, I just can't help myself.

Ton-O-Bricks

2008-11-20T06:34:00.002-06:00

Well, Wednesday is usually the day of treatment week when the chemo drugs kick in and I start feeling like cr&% for the rest of the week. This week was no different on that front but when they kicked in, they kicked in.

Usually I feel bad but that's as far as it goes. Last night I took it a big step further and was vomiting, completely veg'd out in the recliner feeling really bad. Hit me a good bit harder this week than previous weeks.

I actually feel a bit better this morning. Still pretty puny but I was able to get down my meds plus a small glass of water and, the fact that I'm typing here is a big improvement over last night. I need to "eat" but I'm a bit leery. But hopefully last night wasn't some sign of things to come and, instead, was just some fluky blip on the radar where I can finish out the week just feeling like poop instead of REALLY feeling like poop.

Brain Problems

2008-11-18T21:25:00.002-06:00

OK, after my last post I've had several people ask where the I.C.U. and my mom came from. I just threw that in out of the blue.

Apparently in my foggy state over the weekend I dreamed that I had already posted something about that so Tuesday I was just updating briefly.

So, here's the scoop. Mom's had some problems with heavy bleeding from her sinus/nose lately. They've been in to the ENT and were working on it. But Friday evening she had another episode and dad got worried and called 911. They came, mom was a bit non-responsive to their questions, so they took her to St. Lukes down by the plaza, thinking there was a possibility of a stroke.

Well her hemoglobin was way low but they admitted her to I.C.U. to check out the remaining possibility of a stroke. Over the weekend they got the bleeding under control, did some preliminary tests and Monday and Tuesday have been doing more tests. It does appear she's had a recent stroke, presumably Friday night, but all thing considered she's doing pretty well. The stroke was on the left side of her brain -- effecting the right side of her body -- but she's eating with her right hand, her right leg is just as strong as her left, but her speech is a bit more garbled than it was before.

They're going to get started tomorrow working on her nose/sinus to get a long-term solution to the bleeding and get a gameplan for therapy to get her back to where she was before Friday.

That's the update -- with additional details -- that I THOUGHT I had posted over the weekend. So now things might make a little more sense.

I did get down to visit her this evening. Tomorrow is when my Chemo Drugs usually kick in so I should feel like doo-doo the rest of the week and won't be up to going to see mom. I did get to where my surgical mask, though. I'm sure everyone there thought I was a surgeon, don't you think? I was a little surprised no one stopped to ask me surgical-type questions. Maybe my jeans, tennis shoes and regular shirt had something to do with it.

Week 4 off and Running

2008-11-18T07:52:00.002-06:00

Well, I started my fourth of five weeks of treatment yesterday. 18 days from today and I'll be getting my pump removed for the final time -- free of this treatment cr&%. Can't wait.

Last weekend wasn't quite the respit I'd experienced in previous off-weeks. I never really got to feeling that great. I was very tired -- sleepy and energy level -- and just never got going. I did head down to see mom at the Hospital for a while Sunday morning but had to wear a medical mask the whole time and was given a special back-door access so I entered the I.C.U. right next to mom's room rather than have to walk through the whole unit to get to her.

Mom's making progress, slow but sure. Off the ventilator and they're able to begin other tests to see what's going on. I think results are back on most of those tests today.

Unrelated to the I.C.U. visit because it started while I was there, I came down with a low-grade, 100.8 fever on Sunday. Had that all day but it broke during the night, leaving me drenched in sweat in bed about 3:00 in the morning.

Good news of late, though, I've been sleeping like a mad-man. About 15 hours on Saturday, 20 hours on Sunday, another 18-or so on Monday. This is kinda the opposite of the insomnia I've experience for most of the last several weeks. Still, it's not like I wake up refreshed and ready to tackle to day, though. That's what's crazy about this kind of tired. You never get over it no matter how much you sleep. Now, you may get to a point you don't need to sleep, but you're still tired. Hard to explain.

Unsure why but my neck has improved vastly in the last 48 hours. The redness has decreased dramatically, many of the blisters have disappeared and it's just not as sore. No good explanation from the doctors but I'll take it. On the flip side, my mouth is sore as it can be. Yawning really hurts and, of course, with all my fatigue lately I've been doing plenty of yawning.

Jenny's mom is going home today for a week-and-a-half. Getting a well needed break from us, I'm sure, and a chance to get things in order at home for a bit. They're having a Musical presentation dedicated to my Father-In-Law on Sunday. Bill passed away last December so Pat was certainly going to make it down for that. My Brother-In-Law volunteered to be my chauffeur this week so that free'd Pat up to take an extended vacation to her home. She's been a great help, though, so we'll be glad to have her back when she returns.

Enough for today. In the early going it feels like I might be able to stay awake more than a few hours today so maybe I'll be a quasi-productive member of the household for a day. We'll see.

Slow Week

2008-11-14T16:30:00.004-06:00

Friday of my third off-week now. This hasn't been the same routine as my previous two off-weeks.

Monday and Tuesday I think I felt better then I felt on Monday and Tuesday of the previous two cycles. I was pumped, expecting to be ready to run a marathon by the end of the week. However, by late Tuesday or early Wednesday, some of the Radiation effects were kicking in. I have sores inside my nose that, as silly as it sounds, are making me crazy. They hurt and I get nosebleeds several times a day. My neck is getting blistery and is sore to go along with it. Mouth sores are the worst they've been with my tongue looking pretty gross. And my throat is WAY sore. It feels like I'm swallowing glass any time I swallow anything -- Saliva, Water, whatever.

To go along with all this, the whole dry mouth, thick saliva thing is kicking in, amplifying the difficulty swallowing problem. You know how every once in a while you accidentally inhale something wrong and some saliva gets into your windpipe and you gag, perceiving that you're going to die? That happens eight or ten times a day. The other night I had a really good episode in the middle of the night. Scared me and Jenny to death.

I had my weekly appointment with the Nurse Practitioner at the Oncologist's office Thursday. I was really expecting (hoping) her to tell me that the sore throat was, again, the result of a virus or infection that she could treat and make it go away. No go. She said this was all just par for the course. Her treatment suggestion was to increase the pain medication.

I mentioned my hands a while back. They continue to hurt -- good days and bad. Over the course of the last week or so I've peeled a layer, at least, of skin off my palms and fingers. But on bad days I have trouble buttoning my shirt or opening a prescription bottle.

On top of this, my sleep problems have resurfaced. The last few nights I've been waking up about 2:00 or 3:00 in the morning. A little snoozing in the recliner between there and morning, but not real sleep and it's catching up with me.

I've been kinda hoarse for quite a while now but, today, my voice is completely gone. I can whisper but that's it.

A summary, then? Very tired, sore throat, thick disgusting saliva, blistery neck, sore/bleeding nose and painful hands. Not quite the rosy picture I painted about the weekend at the end of my two previous off-weeks. I'm a little disappointed but, as I keep telling Jenny, as crappy as I feel, I don't feel as crappy as I THOUGHT I was going to feel by now back when this all started. So I'm better off than I thought I was going to be -- a big positive.

On the fine dining front, I'm getting my nutrition exclusively from my feeding tube now. I still eat Jello but nothing else. It hurts to eat but, more than that, everything tastes bad. Metallic. I don't know why Jello still tastes OK but I'll take it. Pretty much one batch per day. Jenny and I are going to dinner tonight with Liz and Keith. This will be our first time out for quite a while and our first time period since I quit eating. Should be an interesting experience.

And don't take this wrong, my overall body feels pretty decent other than fatigue. The pain is localized. I've been able to get a fair amount of work done from home this week. I have to work in a nap here and there, of course, but I've felt a little more productive this week.

So, I've painted a bit of a negative picture today. Sorry. Three weeks from today I'll be receiving my last Radiation Treatments, getting ready to go in and get my 5FU pump off the next morning for the last time. Not really that far away, is it?

Three Weeks Down

2008-11-10T09:08:00.002-06:00

My posts seem to be getting more and more spread out. Not sure why that is.

As I said in my last post, the Chemo drugs kicked in last Wednesday afternoon right on schedule. Thursday was a rough day but, without the infections and other stuff I had going on the previous cycle, not quite as bad as the previous cycle. Friday was pretty bad, period, though. Just flat out sick as a dog. I did my best to sleep away the second half of the week, sleeping about 18 hours a day -- literally -- but Friday didn't work out as well.

I pretty much just sat in my recliner and stared at the ceiling, hoping to avoid vomiting. That worked most of the day but not all.

Saturday morning brought new hope because I got to get my 5FU pump off. Not sure if it's in my head or what, but I start feeling better on Saturday morning even before I got the pump off. And once it's off and I'm suddenly free of that Damn thing, I really feel better like right away. It's crazy.

So, overall body-wise, Saturday afternoon, Sunday and, so far today, have been non-bad days. Jenny and I went with Ed and Julie yesterday to scout out some alternative living facilities for my parents and one facility tour was more than I could handle. I wound up sitting in their reception area while the other finished the tour and fell asleep. So yes, I didn't feel horrible but I'm certainly still in the pretty low energy category.

Saturday and Sunday nights didn't bring much sleep. Looks like it's feast or famine on the sleep front. So I'm tired today to go along with my mild wierd-feeling stomach. My mouth/throat continue to be sore and my neck just keeps getting redder and redder and, along with it, more and more sore. Of course, the parts that have already dried up and are peeling -- like a bad sunburn -- itch like crazy so Jenny has a full-time job trying to keep me from scratching.

And last for my whining today, my hands have decided to experience the "less likely" side effect from the chemo drugs. The skin on my hands is getting red, sore, cracking and peeling. I think I had mentioned this a week or so ago but it's gotten much worse. It's getting difficult to button a shirt, take the lid off a prescription bottle, etc. It FEELS like I should be able to put lotion on and that would solve the problem, but this is an inside-out problem and the lotion does little to help.

So, with all my downer info out of the way, we can enjoy a few upbeat stats. I just completed my third of five weeks of treatment. 60% done as far as the treatments themselves go. Today -- Monday -- marks the 37th calendar day from the start of my treatment back on Oct 6th. I get my 5FU Pump off for the last time on Saturday, December 6th -- 63 days after the start of treatment. So I'm 59% of the way through the calendar days from start to finish, but that number keeps going up each day.

Point is, I'm over the hump and I'm on the downhill side now.

Can anyone tell I'm an Anal-Retentive Engineer?

You could set your clock . . .

2008-11-06T10:56:00.002-06:00

Monday and Tuesday went OK this week. I had to get all my Chemo Stuff Monday so it was a pretty full day, but I felt reasonably not bad both days. Wednesday started out that same way but, like clock work, about 2:00 Wednesday afternoon the drugs kicked in and I started feeling like doo-doo.

I went down to my afternoon radiation treatment -- now changed to 3:45 instead of my old 5:00 time -- then came home and crashed. From 5:00 until 11:00 I was out. Jenny said she tried to wake me a few times to take my meds and go to bed, but I just kept going back to sleep. About 11:00, though, she finally succeeded. I did my normal routine to take all my drugs, take care of my teeth, and take care of the skin on my neck. But then I was out like a light again. Woke up about 3:45 and thought I was up for the night but somehow fell asleep again until Emily got up at 5:45.

Frankly I wouldn't mind sleeping away these bad days. So far I'm still awake today, though. Haven't been able to sleep this one away yet.

Week 3 Begins Tonight

2008-11-02T04:09:00.003-06:00

Sunday night I get to start the 3rd of my five treatment weeks. Going into this third week I've had a relatively good weekend. I'm not sleeping again (despite my Ambien), my neck hurts, my hands hurt, my mouth and throat hurt, I'm generally tired all the time and I get pretty well exhausted if I do much of anything. But none of those are as bad as they were a week ago, I don't have a fever, I'm not nauseous at all and, my general, overall body feels relatively OK. Shoot, Ben-Jammin, I might even try a Cartwheel or two this afternoon.

I know that with my 3rd week of treatment this isn't going to last that long, but I've enjoyed the short respite nonetheless. I got a little carried away and tried some Graham Crackers and Milk. One of my favs for a long time. It went down OK from a pain standpoint if I soaked them really well, but the taste just wasn't there. They tasted metallic and I only got down one cracker before I gave up.

I am curious, though. I got some new "suppliment" that's designed specifically for a feeding tube. And it's Vanilla flavored. Why? I suppose it doesn't say you CAN'T drink it, but I'll tell you what, I ain't gonna taste it.

Questions for the Radiation Doc at Monday's appointment. The effects on my skin have been pretty much as they said they would be. Maybe a little sooner than expected, but not THAT different. But the AREA effected is much bigger than expected and, I think, much bigger than they told us it would be. So we'll talk Monday and I'll report back Monday evening. In the meantime, I'm going to enjoy the nice weather and live pretty high today. Shoot, I might even get crazy and go for a drive with Jenny or something "out there" like that.

Wadda Red Neck!

2008-10-31T13:40:00.002-05:00

Went upstairs to take a shower a bit ago and, looking at myself in the mirror, realized just how red Mr. Neck is right now. So I thought I'd share.

As I explained earlier, dead skin has pretty much sluffed off by now and I'm left with the bright, shiny raw skin. As you can imagine, it's pretty sore and it's pretty sensitive.

Beyond this, though, I'm actually having a pretty good day. Overall energy level is up, the antibiotics seem to have done their job attacking at least the sore throat part of the infection, no fever, etc., etc.

This is all relative, of course. My mouth is still sore, still not doing cartwheels or anything, but I have to find good things where I can.

Caitlin's coming home tonight so we'll have the whole crew in for the weekend. Hopefully this relatively good feeling thing will continue through the weekend.

Headin' For the Weekend

2008-10-31T02:52:00.002-05:00

Haven't posted anything for a while. I didn't realize it had been so long.

It's been a middle of the road week so far. I didn't bounce back very quickly from last week's treatment. The chemo drugs left me feeling puny through Tuesday, about the time the Radiation Reaction peaked for the week. Then, to top things off, I've picked up some kind of infection.

So Monday and Tuesday were spent feeling quasi-nauseous and tired. My mouth was getting progressively more and more sore because of the returned Thrush and the Radiation sores. I've now not eaten anything but Jello since Sunday, with everything else going in via feeding tube. The feeding tube thing isn't as big a deal as expected but I'm still not exactly comfortable with it. The good news is that my insurance will cover my Nutritional Supplements for the feeding tube so that's a help.

Skin-wise I've been red and peeling up to my eyes on my face and all the way around my neck. My neck is one solid chunk of raw skin as the dead skin peels away. Kinda like one of the worst sunburns you've ever had. That extends down to my upper chest. So it's a larger area than we were expecting. I called to try to ask some questions but the Doctor wasn't easily available and the nurses were full of generic responses. We considered just going in to see the Radiation Doctor on Thursday but decided to wait until our regularly scheduled appointment with them on Monday.

My facial hair is kinda bitin' it. Not completely a bad thing, but I had to trim off my beard yesterday. I still have my mustache for the time being but we'll see if he survives. I've not had to shave in over two weeks, though. Unfortunately I'm also losing a little hair at the neck-line on the back of my head. This is all due to Radiation, not Chemo, so it's very specific areas.

By Tuesday night my throat was way sore as well and, by Wednesday night, I was running a low fever. We had an Oncology Doctor Appointment on Thursday -- our weekly check in. She said I have an infection that's causing the sore throat and fever and I likely have a skin infection which is contributing to the larger area of redness/peeling. She chalked some of the sores on my lips and inside my nose (getting nosebleeds pretty regularly) to a fungus. So, she gave us three more prescriptions. Antibiotic to fight the infections, Antifungal to fight the fungus and some liquid Morphine so that I'll still be able to take pain medication if I get to the point I can't swallow pills.

Another wierd thing is happening. My fingers -- almost just my finger tips -- have become exceedingly sore. This is something they told me could happen to my hands and/or feet. So far it's just hands but a couple of times I was unable to button a shirt and needed help this week. They're better now but I also have a fair chunk of pain killers in my system to deal with my throat and other stuff. So, we'll see how that progresses.

Being a Structural Engineer and all, I've decided to analyze our cabinets to make sure they are structurally adequate to support the continued onslaught of prescription medications that are piling up on them.

Blah Weekend

2008-10-26T17:49:00.002-05:00

Got my pump off Saturday morning. Don't feel terrible but haven't really rebounded like I did the first cycle. I still feel pretty bad. Not nauseous, really, but not right. Hard to explain.

I've been amazed at the fatigue. I know, I'm not that far into this and it's gonna get worse, but it's a tired like no other tired I've experienced. It's not like you can take a nap and feel refreshed. There's no such thing. You're just always tired.

Jenny got to go to St. Louis Saturday for a friend's son's wedding. I think she had a lot of fun and Lord knows she could use the break.

Sleep came for only a few hours Saturday night. Not sure what the deal was. I got to watch Die Hard, though.

Mizzou kicked butt this weekend. Too little too late, I'm sure, but still better than not having a good weekend. The Chiefs even thought about winning today. I thought they were going to. But, they're just not that good yet and they found a way to lose it. I assume most of you are reading to get some good insight on Football games, right?

Crappy Day II

2008-10-24T20:40:00.002-05:00

Same song, second -- or some other -- verse today. Nauseous, tired and also Nauseous. I did manage to eat some Jello this afternoon and some Oatmeal this evening. That's all I've had since lunch on Thursday. I'll not get into details of my Nausea. Suffice it to say, it's not been fun.

But, another week of treatments down. I go Saturday morning to get my frickin' pump disconnected. Not coincidentally, I think, the chemo drug that's in my pump is called "5FU". Don't mean to offend, but the "FU" part is particularly appropriate. It just kicks my butt.

So, to put a positive spin on things, we're 40% of the way through treatment. Just need to drag through three more weeks of treatment then I'm on the other side. A friend from treatment who's on the same plan I am but is 6-weeks further along, just finished up treatment today. He goes to get his frickin' pump disconnected tomorrow then he's completely done. That gives me something to look forward to. Congratulations Ron and Mel!!

Crappy Day Today

2008-10-23T18:48:00.002-05:00

Worst day of the whole treatment so far today. Ugh!

Started feeling nauseous on our way to treatment this morning and that just set the tone for the day. I've felt nauseous all day today and slept most of the day between treatments. This in spite of the fact that my good friend Keith was over doing work on our basement most of the day. He did get a few jabs in because I slept through a fair amount of noise on his part then woke up when my cell phone rang. I guess I'm conditioned.

But the nauseousness is almost overwhelming. I really feel like I need to puke and I'd feel better, though I'm not sure I really would. But I'm not puking, just feeling like it's imminent. This afternoon and evening my neck has really started hurting. I guess the radiation treatments are finally catching up with me. It burns. It's sensitive to the touch. My shirt rubbing on it makes me crazy.

I just want to be done! And I'm on day four of cycle two. I've got a long way to go. Better buck up!

Long Day

2008-10-22T19:28:00.002-05:00

Dang, it's amazing how long a quick, 7:30 radiation treatment and a 9:00 "how's it going" doctor appointment can take.

Not sure how but radiation was running behind -- at 7:30 in the morning -- and we didn't get out of there until 8:15 or 8:20. So instead of First Watch, we had McDonald's for breakfast so we could get to my 9:00 Doctor Appointment on time. Needn't bother. That went exceedingly slow as well.

But, we did finally get to see the doctor, get a few questions answered and, according to the MRI results from yesterday, the tumor is shrinking so that was good news. Lymph nodes haven't changed much but they weren't expected to. While there they suggested I get a Flu Shot and a Pneumonia Shot so I did -- right then and there. Well, sorta right then. That added an extra 45-minutes to our stay.

But, I'm now vaccinated and have a nice sore shoulder for my effort. From the shot, though, not from everything else.

The MRI also showed that there are no structural problems with my neck/nerve thing. They've concluded my left shoulder problem is Shingles. Looking closely at my neck he found what he thought were signs of Shingles that we had probably mistaken for Radiation effects. In any case, he thinks the Shingles are bugging the group of nerves under my left collar bone and that's the source of my problems. So, I guess we have a culprit and it seems under control with the pain medication, we just need to get them fully placed under thumb.

For the first time the skin on my neck is really starting to feel and look funny. It feels "thick" or leathery to me all the sudden. I guess I knew it was coming.

Tired, tired, tired tonight. Hopefully that will translate to a good night's sleep tonight.

Knock on Wood

2008-10-22T05:02:00.000-05:00

So far so good with this round of treatment. Yeah, we're only 2-days into it, but by this point last round I was into the Heartburn and starting to feel nauseous. Hopefully proactive pill-taking has prevented or minimized those this time around.

Got a prescription Monday for full-fledged sleeping pills. Worked very well Monday night. Slept through the night!! And in my own bed!! Jenny and I couldn't remember my doing that since my surgery Aug 29th. Tuesday night's gone pretty well. I slept until now -- about 5:00 am. Not perfect but way better than things were going before.

All these drugs, though. And I'll get to take more as time goes on. Kinda worrisome.

Jenny's going with me to appointments this morning. I have an early -- 7:30 -- radiation treatment then an appointment with the Oncologist. Just a check-in to see how things are going type appointment. We do have some time to kill between appointments so we're going to hit First Watch and I'll see if I can't get down some good breakfast food. Probably Eggs and Pancakes is all, but it's real food.

Folks continue to be great by bringing over food. Thanks so much. Some things have worked out for my to eat some but the family's been chowin' down and it's been great. Thanks again.

Day 1, Round 2 Down

2008-10-20T18:40:00.000-05:00

Combo day today with Chemo and Radiation treatments. Morning confusion as there was the first time around. Where to be when, what treatments are we doing in what order. Not sure why they can't sort that out before we arrive. But we made it through. So now I have my handy fanny-pack I get to wear all week with the 5FU drug getting pumped in slowly over the week.

Also saw the Radiation Doctor after my morning treatment. I had lost 4 pounds since last Monday. The Nurse got on to me, the Resident got on to me and the Doctor got on to me. I felt like I was in a prenatal visit. They told me that even though it FEELS like I'm eating a lot, my mouth pain makes me think I'm eating more than I am so I'm supposed to start supplimenting with 2 or 3 Boost/Ensure type shakes per day. Don't need to use my feeding tube or anything as long as I can drink the supplements, but they want me downing more calories.

He was also a LITTLE concerned about the amount of mouth sores I had at this stage. He said any mouth sores this early SHOULD be caused by the 5FU drug more than the radiation but, as a precaution, he put some sensors on my lips during my afternoon treatment to make sure there wasn't something awry there.

Tuesday morning is my MRI on my neck to see what's going on with my left neck/arm thing. This is to check for any structural stuff -- slipped disc, bulging disc, etc. -- then we'll go from there. The drugs have done a good job of keeping it under control. It's still there, numb in the same places, hurting in the same place, the hurting just isn't as intense. So hopefully we'll get some kind of positive result from that. Dr. Appt to review the results isn't until Friday, though.

Talked for a while to a Guy and his wife that I've been following along all the first week of treatment. He's on the same treatment schedule I've been on but he's starting his LAST week of treatment today. I hope I'm in as good of shape as he is come December 1st. Of course, they told us a story of another man who's starting his second cycle just like I am and he already has tons worse stuff than I have. So who knows. We'll just have to wait and see and do our best with whatever gets thrown our way.

I ate two eggs over-easy and two pancakes this morning. The eggs went down easily. The pancakes were slathered in butter then drenched in syrup. That softened them up enough to make them go down without to big a fight. I really hated having all that butter on there, though. :)

Ignoring Football, a Pretty Good Weekend

2008-10-19T13:37:00.000-05:00

OK, we'll get this right out of the way up front. Blue Springs H.S. -- ranked #1 in the state and #43 in the nation, got their butts kicked by Blue Springs South. Mizzou got their butts kicked by Texas -- no comments from any of you current Texas residents who moved there from Missouri -- and the Chiefs are in process getting their butts kicked. So, we're 0-3 in games of interest here at the Robinson household.

Fortunately we're not sports fans.

Separate from the Gridiron, though, I've had a relatively good weekend all things considered. I've pretty much given up on eating things that require chewing. But Jen and Pat have been exercising the blender quite a little bit -- blending up my soups before I eat and dreaming up variations of smoothies and shakes. I did have some grapes -- unblended -- with my lunch today. Kinda-sorta chewing and it worked OK. But bottom line, my mouth is still pretty sore and pretty gross looking.

My right shoulder (Surgery Shoulder) is making daily progress. Still a month or so away -- if this continues -- from anything approaching normal but it's making progress.

And, my left arm/neck problem is still hanging around but hasn't had any more of severe flare-ups like I did late last week. The numbness is still there, a deep ache is always there but manageable, and I get occasional short term flare-ups, but just for a few seconds, not hours. Not sure if it's the Lyrica, some other drug or if it's just getting better.

Sleeping's still been on-again/off-again. Thursday night was good, Friday night was only about 3 hours long, then last night I got in bits and pieces that added up to seven or eight hours but there were several interruptions. I'm always tired. And I don't know if that's because of the cancer, the drugs, the lack of sleep or all of the above.

But all in all, not feeling terrible and we're gearing up for my next week of treatment. I started tacking the Heartburn medication yesterday and I'm starting the anti-nausea medicine today. And Jenny bought me a second Sunday-thru-Saturday pill dispensor so I can have one for morning and one for evening.

Damn I'm cool!!

The dogs are all getting along well now. Petrie and Trampus (Pat's dog) wrestle incessantly and Woody referees and, otherwise, ignores them.

Back to the routine tomorrow. Chemo, Radiation, etc., etc. Pat's got her driving gloves on.

AAAAHHHHHHhhhhhhh

2008-10-17T08:24:00.000-05:00

I thought last night was going to go like the previous few nights with my arm making a bid for my gnawing it off because of the pain. That pain kept showing up in bits and pieces but never fully manifested itself. I guess the drugs did their job.

But, come 11:00 or so I got into the recliner, found a position where my arm didn't hurt and I didn't move. Jen threw a blanket over me and brought me a glass of water and that's where I stayed -- until 4:00. 5-hours of uninterrupted sleep! Unheard of. Then, as a kicker, at 4:00 a got up, took a bathroom break, threw down one more pain pill then . . . went BACK to sleep.

What a night!

Cancer? What Cancer?

2008-10-16T15:05:00.000-05:00

I'm finding this hard to believe. I'm 6-weeks removed from pretty significant shoulder surgery. I've been diagnosed with Cancer and I'm off and running with treatment to get that cleaned up. And neither of those are my most pressing issue de jour.

My arm/neck/nerve thing on my left side is just about out of control. Yes, it comes and goes. When it's "Gone" my arm is achy and weak and my neck is numb but sensitive to the touch. That's when it's gone. When it comes my upper arm is uncontrollably painful. Nothing I can do to appease it, it just hurts like hell. Poor Emily and Jenny have been exposed to some language I'm sure they had never heard before. Hopefully Sophie can't hear.

But seriously, I'm not sure what to do. I have an MRI scheduled for next Tuesday to look at my neck and spine to see if something's awry there. I had an appointment this morning with the Nurse Practitioner at my Oncologist office for bloodwork, weigh-in and general "How are things going" visit. She said we'd be needing some advanced pain meds soon enough any way so why not go ahead and get started to see if they help with this neck/arm thing. So, I have a "pain patch" I get to start wearing that doses me regularly then I have some other good stuff to help with the peaks.

I'm a little hesitant to be taking all these drugs -- especially so early -- but she told me not to worry about it. It's just part of the course.

Now on to the miniscule subject of my cancer treatment, I have sores and blisters on top of sores and blisters in my mouth. Absolutely disgusting -- not to mention painful. The N.P. told me I've already managed to develop a case the Thrush -- a yeast infection -- in my mouth. So I got more drugs to deal with that.

When this all started I bought one of those pill dispenser things that "old people" have to put all their medicine in. You know, it has seven little compartments with "S", "M", "T", "W", etc. on top of each compartment. What the heck!?! I have too many pills to fit into the stupid compartments! I'm going to have to get a second one so that I can have one for my morning pills and one for my evening pills.

Body wise I feel pretty good this week. My mouth and throat are killing me, my right arm/shoulder are making progress but still well below normal and my left arm -- well, you already heard more than you wanted about that. But other than those non-insignificant items, I generally feel well. Still tired, of course, given my ongoing insomnia, but no nausea, no heartburn, no other general aches and pains. I'm extracting that as a positive for the week.

I have a full-time Chauffer now in Jenny's mom. Between the lack of sleep and the pain drugs I'm not interested in another "nap at the stoplight" incident. So I think my driving days are over for a while. Tim will be devastated as that means he now has a car to drive.

And many thanks to the folks from Jenny's work and from the Soccer team. We've been getting some great meals and they just keep coming. Thank you all. That's one less thing we (Jenny and her mom) have to worry about plus the food's been marvelous. I'll have to admit, we're getting pretty close to the point I'll not be enjoying them personally but the rest of the crew still has to eat and it's been great. So thanks for that as well as all the thoughts, prayers and cards that have come our way. We can feel your support and we appreciate it.

OMG - A Mouth Transplant, Please?

2008-10-14T21:32:00.000-05:00

Geez, I know I'm just a week and a half into this and I know I have even more fun to look forward to, but my mouth is KILLING me already. What's this going to be like in a couple more weeks? I try not to think about that.

Muscled down some steak soup and french bread for dinner tonight. It was darn good but it was a challenge. Just take your time, dip your bread in the soup to get it soggy, and grit your teeth when you chew or swallow. Jello ain't exactly a nutritional giant but is much easier to eat. We're getting to be friends.

Went a new doc today to talk about my LEFT shoulder that's been giving me trouble. And having said that, it's not really my shoulder as much as it is my neck and my left upper arm. Comes and goes but when it's there, it's excruciating. Yeah, I know, I'm sounding pretty wimp-like, but I can't understand why this is all coming together now. The Doctor had a couple of theories on what's going on. Took and X-Ray that was non-conclusive. They're going to schedule an MRI that will rule out any structural things then we'll go from there. I think I'm going to know all the folks at Diagnostic Imaging on a first-name basis here pretty soon.

Sleep was lacking again Monday night. Got in about three hours. Did get to watch a good, old Christopher Walken movie on IFC. I like C.W. Kinda wierd but in the right role, he's good. So much for the wedge pillow and new drugs as miracle cures. I fell asleep in my car at a stoplight this morning on the way to work. Even managed a quick dream before someone honked. Couldn't believe it! I've never done that before and it scared me. I'm going to have to be careful about driving.

2008-10-14T05:53:00.000-05:00

Sunday and Monday went reasonably well. I'm very tired all the time. Partially because of my continued poor sleep and partially because I have cancer and I'm taking a zillion drugs that make you tired.

I did receive my mail-order prescription, finally, for some anti-anxiety medicine that also function as a sleeping pill if you take two at night. I did just that Sunday night and also used a "Wedge Pillow" for the first time. Something went right because I slept through the night.

My mouth and throat are getting progressively more sore since treatment stopped. I guess the Radiation continues working it's wonders for several days after your last treatment. Eating is getting very difficult already. I did stop at a waffle house on the way to work Monday morning and threw caution to the wind. It just sounded too good. I had their all star breakfast -- two eggs, hash browns, Sausage, toast and a waffle. I took me, literally, an hour to eat and it hurt like heck, but it was worth it. Pat (Jen's mom) made meatloaf with roasted Potatoes and Carrots for dinner. Same song, second verse, it hurt like the dickins but I kept after it with my mini-bites, lots of gravy and lots of chewing per bite. Again, it took a long time and it hurt, but it was worth it.

Monday night's sleep wasn't quite the miracle that Sunday night's was. The left Shoulder flared up again. Completely numb from my neck to my elbow and deep pain in the deltoid. Working on four days now so I guess I'll call the doctor about it. Woke up about 1:30, though, and have never REALLY gone back to sleep. Got in a few snoozes here and there but never any deep sleep. Tuesday should be a good day at the office.

Overall summary, then. General body feels great. I'm tired, tired, tired, my mouth and throat hurt like H$%#, and this pesky left shoulder is still a problem. But I'll take all that to not feel nauseous or that heartburn again. Not sure I'll have that choice here before too long but, for now. . . .

One Week Down

2008-10-11T23:07:00.000-05:00

Friday went down hill in a hurry after my late afternoon post. Headed down for my 5:00 treatment and started feeling worse and worse as the trip went on. By the time I got home I had no interest in Dinner and instead crashed.

After a couple of hours I woke up and ate a little soup. Tasted pretty good on the way down. Not so good on the way back up a couple of hours later.

Just to complicate matters, at some point in my napping Friday evening I did something to my LEFT shoulder. I woke up and, obviously, slept on something wrong. But it's hurting like "H" "E" Double Toothpicks and it's numb from the left side of my neck down to my elbow. Why does this have to happen now?

Saturday's been a better day, though. I got my pump removed this morning so that officially wrapped up the first week. The shoulder's still buggin' me but not quite as bad. And other than the shoulder, my stomach and other stuff are feeling much better. Actually made it out on the town a bit this afternoon, ate a real lunch and a real dinner, and stayed up for the whole Mizzou game. Although this would have been a good game to have slept through as it turns out.

Now we'll see how the week off goes. Hopefully since nothing else has gone as I was told it would, my week off won't either and I'll do fine.

First week ALMOST done

2008-10-10T18:03:00.000-05:00

Friday's been much better up until the last couple of hours. Pretty consistent feedback from everyone around -- "You look/sound so much better today". Just started getting the heartburn and a bit of nausea again this afternoon. Not sure what's up with that.

We're supposed to be going to dinner tonight with Jen's family. Not sure if that's going to happen for me or not. We'll see how the next hour or two go. They're going to Carrabba's, which I love, but I'd not be able to eat my normal fair -- Fried Calamari and some chicken dish that's loaded with cheese -- so I may be better off just skipping. Thought they do have pretty dang darn good bread and I should be able to get some of that down OK.

Gotta go for my 5:00 radiation treatment here in a few minutes, take a pill tonight then go tomorrow morning to get this D*%# pump removed. Then I'll officially have my first of five treatment weeks done. Talking to a couple of guys who are doing the same treatment I'm doing but are a few cycles further along, the week off is actually worse than the week on. So, who knows what to expect for next week. I've quit trying to anticipate and I'll just take it as it comes.

Not a Great Start

2008-10-09T11:11:00.000-05:00

Haven't posted much this week. Mostly because I've been feelin' pretty blucky. This first 2-week cycle was SUPPOSED to be uneventful. Not so.

Made it through Monday feeling absolutely AOK. Tuesday started bringing on some Heartburn. Something I've never dealt with before so I now feel bad I've not been more empathetic with Jen because it's a regular problem for her. Wednesday the heartburn was even worse and I started feeling a little nauseous, tired and headachey and I'm tired, tired, tired.

The doctors called me in a prescription for the hearburn, I went ahead and started taking my anti-nauseau medicine and slept, basically, from 6:00 pm Wednesday until 6:00 this morning. Woke up a few times but actually managed to get back to sleep eventually.

Today's going a LITTLE better. Heartburn has settled down a bit, though I'm limiting myself to Peanut Butter Toast and Carnation Instant Breakfast so far. Still WAY tired. I didn't try to go to work between treatments today so I'm doing some work from home.

I'm pretty disappointed. Like I said, this first round was supposed to be pretty easy without much in the way of side effects. Everyone's different, though, and it looks like I'm just lucky. Hopefully this is just some early stuff and isn't an indicator of things to come.

Jen's mom arrived last night to help us out over the next few months. The dogs are an interesting delimna so far but they'll get used to each other soon enough and, I'm sure, become fast friends.

1 Down, 24 to Go

2008-10-06T20:53:00.000-05:00

Five weeks of treatment (every other week for nine weeks) with five days of treatment per cycle. That's 25 total days of treatment and I've got one of them down. And, only five of the treatment days are combo Radiation/Chemo days and I've got one of those five out of the way. So dang, this treatment thing is just flying along!

The day was a bit confusing because of some mix-ups of where we were supposed to be when between the Radiation Folks and the Chemo folks. Once we worked through that here's how the day went. Show up at 8:00 at the cancer center to have them install my pump that I'll wear all week and, slowly over the week, it will dispense a Capri-Sun-sized packet of drugs. From there I went a mile down the road to KU Med Center for my first radiation treatment. While I'm there on Monday mornings I meet with Dr. Wang (Radiation Guy) to check in and see how things are going. A mile back down the road to the Cancer Center for and I.V. drip Chemo Treatment. That takes an hour and a half or two hours. Then I have a few hours to kill. Not enough time to go to work or, later, home so I'm searching out local haunts where I might be able to hang out, get internet access to do some work. Found a good coffee shop on the Plaza. We'll see how long that works. Then, late afternoon I go back for my second Radiation treatment of the day and it's off to home.

The rest of the week I'll take my chemo drugs at home, wear my fanny pack with the pump and go to a morning and afternoon Radiation treatment. Should have 7 or so hours between treatments to go to work as long as I can or go home later when I'm not up to going to work.

So that's the routine. I forgot the Camera today but did get a picture of me bolted down to the table with my mask using my camera on my cell phone. Not a great picture but it gives you an idea. If I remember I'll bring the camera and get a better picture tomorrow and replace the picture I'm posting tonight.

And how do I feel? Absolutely fine so far. During the treatments today they gave me some formulation of Benadryl that they told me would put me to sleep. Didn't quite do that right away but made me pretty drowsy. Jenny and I hung out in the Visitors' Lounge for a while after the treatment and I did wind up snoozing for 45 minutes or so. But with a nap under my belt, I felt fine. They keep telling me this will come on gradually over the first 2-3 weeks so we'll see. So far so good.

Aaaaannnnnnd, They're Off!

2008-10-06T00:39:00.000-05:00

Well, started out taking my first Chemo Pill tonight so, it's officially started. Had to post my first picture to mark the occasion. Tomorrow morning we're on for more chemo and a couple of radiation treatments. Should have time to kill during and after the IV chemo where I can get in some work from the Hospital. We'll see if that's going to be worth the effort to be productive. Hope to get in to my afternoon Radiation treatment early so I can get out in time to get to Tim's soccer game.

Not sure what I'm getting into but, here goes!

M-I-Z, Z-O-U

2008-10-05T05:28:00.000-05:00

Nothing real to report other than Mr. Sleep and I aren't getting along again. But I did want to make sure everyone knew that Mizzou kicked some Cornhusker tail last night.

I'm not really sure how to play this whole Mizzou thing with the folks at KU Med Ctr. There are an awful lot of those little Jayhawk characters on the walls, on business cards, on letterhead, everywhere I look down there. I mean, I know they're saving my life and all, but what's the etiquette here?

OK, I'm starting my last day of "normal". Word on the street is that after treatment it takes 6 months to a year to get back to "normal" but that once you get there it's a different normal. Your body never REALLY feels the way it did before the process began plus you have those lingering side affects. Certainly I'll take the side affects and the different "normal" as a trade off for successful treatment, but this whole thing is wearing on me. So much unknown.

Yikes! Got a little philosophical on you for a minute. Sorry.

But the routine starts tonight. One chemo drug I have here at home in pill form then Monday it's off for two other chemo drugs and two radiation treatments.

I am ready to start killing these little suckers. I've been crazy with waiting and mentally counting the Gazillions of Cancer Cells that have been reproducing while we've been diagnosing and testing and preparing for treatment. But I'll tell ya, now that the time is here . . . kinda scared.

Back Home and Ready to Go

2008-10-04T12:25:00.000-05:00

After my upbeat post Thursday afternoon from KU Med Center, things went downhill in a hurry. Unsure if it was a reaction to the medicines they were giving me or if I just got a case of the flu or something, but most of Thursday night was spent puking or feeling like I was going to puke. And, as you can imagine, puking and stomach surgery are a great combination. Early Friday morning they gave me some pretty strong anti-nausea medicine which helped with the puking but really zapped me stupid.

While at the Hospital (and zapped stupid) they took me over to Radiation for a dry run Radiation Treatment before Monday. Making sure the mask fit correctly and everything was in place for the start of the real treatment. That mask is dang-darn tight. 10-15 minutes of having your head/face clamped down to the table. Just ain't real comfortable. I'll try to get a picture to include in Monday night's post.

So, we're now home, I think whatever was causing my problems is gone now, I feel relatively OK and I've been up and about today. My stomach muscles are a little sore but not terrible.

Mizzou game tonight at 8:00. Looking forward to that.

Tubes, Tubes, Tubes

2008-10-02T21:07:00.000-05:00

Broadcasting to you LIVE from beautiful downtown (sorta) Kansas City, KS. We're here at the beautiful University of Kansas Medical Center and we're ready for some excitement.

Well, we are at KU Med Center, anyway. They have internet access available in the rooms so I thought I'd take advantage.

Had my surgery today to install my PEG Tube and my Port. For those who don't recognize the term PEG Tube you probably know it by it's non-abbreviated name; Percutaneous Endoscopic Gastrostomy tube. :)

Jenny spent the day with down here and, I think, read an entire book. Close to it any way. Lot's of sitting and waiting. The Port -- at this point -- is no biggie whatsoever. Hardly know it's there. The PEG Tube is a little sore. You mess with stomach muscles and it just hurts. But not bad.

I get to spend the night tonight so that they can test the PEG to make sure everything's installed correctly. Should be going home mid-afternoon tomorrow.

GAWD I'm hungry and thirsty. I'm not quite half-way through my "no food or water" period from this morning to tomorrow morning after the tests. Gonna have to gorge this weekend if I want to be thinking about that 10 lbs.

Time's Closing in

2008-10-01T14:30:00.000-05:00

It's been a few days since I've posted anything -- mostly because until yesterday afternoon there wasn't really anything medical to report.

But Tuesday I went in to visit with the Oncologist and finalize treatment plans. So, we're as official as we can be at this point. I'll start treatment on Monday, Oct 6. The treatment will be five 2-week cycles. Each 2-week cycle will begin with my taking some chemo drugs at home on Sunday then going in Monday morning for them to install a "pump" that I'll carry with me all week and will give me measured doses of another chemo drug throughout the week. From there I'll go in for a radiation treatment, go back for an I.V. dosage of a 3rd chemo drug that will take a few hours, and then it's back for another radiation treatment. The rest of the week -- Tuesday thru Friday -- I'll go for a morning and afternoon radiation treatment each day then, Saturday morning, I'll go down for them to remove the pump. I take the second week of each cycle off to complete the two weeks then start it all over again the following Sunday.

Five of those mean my last week of treatment will be the week of December 1st. Yes, I already have that marked on my calendar.

This morning my Ortho Doc juggled his schedule to work around my appointments at KU and met with me at 6:45. Really appreciated that. Plus, he gave me my arm back so I'm even more happy about that. Up until this morning I've had strict instructions to do NOTHING with that arm other than keep it in the sling or let it hang by my side. P.T. did some stretching with it but nothing I did my self. So now I get to start working back in to using the arm again. Probably take another month or two before it's much use to me, but we're making progress.

I then went to KU for a swallow study. Pretty cool, actually. Basically a video-X-Ray where they watch and record my swallowing different things. Some liquid, some thick liquid, a graham cracker and a pill. I got to watch out of the corner of my eye and it was pretty neat. I got a passing grade on my swallowing technique and abilities. Quite an athelete, eh?

Also spent some time with the folks that will be handling installation of my PEG Tube and Port tomorrow. Had to go over all the what to do and not do in the hours leading up to my appointment. The best part is that I can't eat after 6:00 am and won't get to each again until mid-morning on Friday. Say what! I've been doing everything I can to gain the 10 lbs I was instructed to gain and have conditioned my body for non-stop food intake. Now I not only lose 24-hours opportunity for weight gain but also have to tell my body "no food" for 24+ hours?

The weight gaining thing isn't going that well in the first place. I've been trying to do my job but, as of Tuesday morning, had only managed to gain one pound. Jenny and I did go to Lidia's last night with Ron and Alice. I had the all-you-can-eat Pasta Trio and, I thought, performed admirably. But all momentum will be lost on Thursday.

Decisions, Decisions

2008-09-27T06:55:00.000-05:00

Friday had two appointments. 2nd Opinion Oncologist in the morning and Radiation in the afternoon to do prep work for treatments.

Thursday evening was spent mulling over my options about going to MD Anderson for a 3rd opinion but delaying treatment in the process. Some of these recent decisions that seem to have a bit of a Life-or-Death theme to them have made life's previous "big decisions" seem pretty trivial. But thank you to everyone who patiently talked with me Thursday evening.

My 2nd Opinion Oncologist was VERY helpful. First, he agreed with the basic decision that surgery isn't a good option and we should head straight into treatment. He said that he could, or others could, offer variations of the Chemoradiotherapy but that none of those variations have proven more successful than others at curing the cancer. Some seem to have varied side affects and that type stuff, but the basic objective of getting better won't change. We talked specifically about our situation with MD Anderson. He said MD Anderson certainly has a cutting edge center. But he's confident there's nothing in the works right now down there that would apply to me. Not even a need for the physician-to-physician discussion. In fact, he said their version of the Chemoradiotherapy includes a Chemo drug that, inexplicably so far, people from a region of the Midwest -- including Kansas City -- can't tolerate. They'd modify it, of course, but it would be a variation from their standard.

So Jenny and I left there pretty much with a decision in hand. Cancel the MD Anderson appointment and go forward with treatments starting October 6.

Man that feels good!

Went through the afternoon appointment uneventfully. Inject some contrast in me for a CT Scan of my head and neck, make my "mask" then actually do the CT while in the mask. The mask starts out as a flat, hard, plastic mesh shaped generally like a head and shoulders. All around the perimeter -- except across the chest -- there's a solid, hard plastic (I think) with clamps on it. They put the whole thing in hot -- no wait -- VERY hot water to soften the mesh. In the meantime I lay down on my back on the table for the CT. I close my eyes and they take the whole mesh thing and press it down over my face, neck and shoulders, the mesh stretch because it's softened in the VERY hot water, then clamp the edges down to the table. So I'm literally bolted down to the table and couldn't move if I had to. They work to form the mesh closely around my nose, chin, neck, eyes, etc. so that it forms a perfect fit mask. Once it sets up I couldn't even open my eyes. And that contraption does two things. 1) it holds me perfectly still during radiation treatments and 2) they can do all their markings on the mask instead of on me.

In the old days, apparently, markings were done on the skin. Permanant marker and/or tatoos. So I prefer the mask.

From there I went out to work for a few hours. When telling David R about the mask he said that he hopes my nose doesn't start to itch or anything. With that thought now present in my brain I'm confident Mr. Nose is going to itch pretty consistently during treatments.

I've been given instruction to spend the next 10 days eating as much as I can and eating all my favorite foods and, if possible, to gain 10 lbs. Hey, it's doctor's orders!

Jenny and I started the tour last night and went to Stroud's with Liz and Keith. Chicken's good, Chicken Fried Steak is good. But I go there for Pork Chops. Oh, man! If you haven't tried them you need to. I get them broiled with my 'taters mashed and tons o' gravy. Life is good when you're actually TRYING to gain weight. It's like I'm 16 all over again. Well, sorta. At least I'm trying to gain weight.

And by the way, I'm not a "blogger" and have no idea of proper "blogging etiquette". I've enjoyed the posted comments, particularly Ben's insight to possible pronunciations of my Doctor's name, but if I'm supposed to be acknowledging them or replying to them or something, I don't know how. So don't think me rude.

Nothing's easy

2008-09-26T01:59:00.000-05:00

Saw the "special dentist" today. Good news there -- I get to keep all my teeth!! For those who don't know, they proactively extract marginal teeth before radiation treatment because the radiation's so hard on the gums and teeth that marginal teeth will need to be pulled later anyway but, later, the gums and jaw will be less healthy to deal with it. But, non-issue for me hopefully.

From there the day got more confusing. In the process of a few hours MD Anderson called back -- finally -- and actually scheduled me to see one of their top notch docs on Tuesday, Oct 7. My radiation doc, then, shocked me by saying they're ready to begin treatment on Monday, Oct 6.

So, I now need to weigh the tradeoff of delaying treatment for the opportunity to visit with the doc from MD Anderson. Gut tells me the MD Anderson guy is not going to be able to offer me any miracle cure or, even, any super-secret new trial they're running that they THINK will be better. I've read and read and read and it APPEARS everyone does some variation of the same treatment. But do I want to miss this opportunity just in case?

Conversely I've been chompin' at the bit to get started. In my mind I can just see the cancer cells multiplying and multiplying and I am having more and more obstruction in my throat. It's obviously getting bigger and I'm ready to start shrinking it.

We're going to lean on the 2nd opinion Oncologist tomorrow to see if he can't help us squeeze some info out of the MD Anderson folks to see if that trip would be worth our while.

Oh, and to further muddy the waters. The Radiation Doc doesn't think I qualify for the clinical trial I posted about on Tuesday. There's certain criteria you have to meet with the progression of "the disease" and I'm not there yet. I'm not sick enough. I suggested to the Doctor that we could just wait a couple of months. I got him to chuckle. But he was going to talk to the Primary Oncologist Friday to see if that's even an option. Not sure I care but we'll see.

Never Mind on the "We Have A Plan" thing

2008-09-23T20:33:00.000-05:00

Saw the Oncologist at KU Med Center. Going in Jenny and I both thought we were going to finalize plans for our 6-week regimen that Dr. Tsue talked to us about. At least that's what we thought Dr. Tsue talked to us about.

We were, instead, presented with three options for treatment.

Option 1: A 6-week regimen of combined Chemotherapy and Radiation -- Chemoradiation Therapy. Five days a week for six weeks. Feel like Hell for most of the treatment time and for a while afterward but it's "only" six weeks.

Option 2: Participate in a Clinical Trial sponsored by the University of Chicago. The "Decide" Clinical Trial that looks at the potential benefits of a 6-week treatment with Chemotherapy alone before starting Chemoradiation Therapy. If I participated I would randomly be placed into a group that did or a group that did not use the 6-week Chemo treatment. i don't pick, the doctor doesn't pick, it's random. Another difference, the Chemoradiation portion of the treatment -- either way -- is administered differently. Different chemo drugs and the treatment is administered in alternating weeks over a 10-week period rather than every week for 6-weeks like Option 1. So this treatment is 10-weeks or 16-weeks depending on which group I'd get assigned to. So it takes a lot longer but patients tend to be not quite as sick with the 10-week Chemoradiation approach.

Option 3: Don't participate in the clinical trial BUT run the 10-week Chemoradiation treatment like I would have gotten in the study, I just get to pick. Again, most people tolerate it a little better but it's an extra month of time.

It sounds like we just need to decide, right? But, of course, it's not that easy. We got home and discovered we had heard a couple of key things differently and that some of the written information we came home with doesn't jive with what we both thought we heard.

So, we have questions to get answered before we can make any decisions.

We do continue to fill up our calendars with more and more appointments.

Good news, we have an appointment Friday morning with another Oncologist. A collegue of Jenny's dad when he was in practice here and he's agreed to meet with us to review the plan to see if it makes sense. A second opinion. Mostly just someone who's knowledgable who can tell us if we're way off base. I don't expect it but this is too important. I'll quit pursuing a second opinion from MD Anderson or Omaha now.

Next week on Tuesday I have a follow-up with today's Oncologist, on Wednesday I have a "swallow test" to set a baseline on what my swallowing capabilities are and, on Thursday, I get my Port and my PEG Tube put in. The Port is basically a semi-permanent I.V. and the PEG Tube is a feeding tube so I can suppliment whatever nutrition I'm able to get down with a sore, swollen throat. We think this translates to an overnight stay at the Hospital Thursday night but that's another question.

So, we're flying forward toward the beginning of some treatment, just not sure what that treatment will be. Geez, this was a long one. Sorry.

Appointments Scheduled

2008-09-19T23:23:00.000-05:00

Dorothy called today from Dr. Tsue's office. They were quicker than expected with the appointments. The Oncologist Appointment is next Tuesday (Sept 23) morning. The Dentist and Radiologist are both on Thursday (Sept 25).

Still no word back from MD Anderson and I don't think the Omaha option is a good one now that things are moving a little quicker here than expected. I'll look into some options locally.

And, we have a plan

2008-09-18T23:12:00.000-05:00

Saw Dr. Tsue this afternoon -- and evening. His coordinator had warned us that our 3:00 appointment time won't mean that we'll see the Doctor at 3:00. It will likely be well after 3:00 before we get in. Good thing she warned us.

We got called back from the waiting room at 5:30 and left his office at 6:45. A long afternoon. But it was OK because it wasn't like we were anxious or were waiting to get any life changing information or anything like that.

But, we did get in and, other than the scheduling, we liked Dr. Tsue and his staff. We didn't like all the news they gave us, though.

The PET Scan showed the cancer had spread to one lymph node on the left side of my neck. That's the only spreading, and that's good, but we'd have preferred no spreading, of course. The size of the tumor and the fact that it has attached to a few places in my throat -- thereby spreading into some of the soft tissue -- leads them to suggest we NOT remove the tumor surgically. They said to remove it and to create their margins they would have to remove too much tissue and I'd have some serious long-term consequences to my swallowing, saliva production, etc., etc.

Instead they recommended a six-week regimen of combined Chemo and Radiation. They said this has near identical success rates to surgery for treating the cancer itself and, though it has it's own set of significant long term consequences, those consequences would be much less significant than those from Surgery.

They'll set us up with appointments with an Oncologist, a Radiation Doctor and a Dentist. The Dentist is to look at my teeth because Radiation is hard on teeth and will cause any marginal teeth to fall out. Rather than wait for that to happen they'll pull any marginal teeth now while the gums are healthy. She thought they could get the Dentist scheduled for next week but expected the Oncologist and Radiation appointments to fall into the week of Sept 29.

I hate all this waiting but, as long as we're waiting, maybe we pursue this 2nd opinion thing some more.

Second Opinion?

2008-09-17T22:55:00.000-05:00

We've spent a good bit of time this week trying to figure out if we can get a second opinion, if we should get a second opinion, who we should get a second opinion with, etc., etc.

I've discovered that I have some options through my health insurance to go to one of several Cancer Centers across the country. I could go there for treatment or for a second opinion. This sounds like a great option but the logistics are still cumbersome. MD Anderson was closed until today because of Hurricane Ike. I entered a self-referral through their website, though. I talked to the University of Nebraska Cancer Center in Omaha. Their next available appointment date is October 8th. It's clear a 2nd opinion -- at least from one of these facilities -- will delay treatment.

I went to KU Med Center for my PET Scan and Chest CT today. I guess I'll get the results tomorrow.

A tough 24 hours

2008-09-12T22:44:00.000-05:00

On top of everything that's going on with my tonsils -- and maybe because of it -- my shoulder's been really giving me fits this week after surgery. Yesterday it got REALLY bad and I wound up leaving work mid-afternoon and, after a few phone calls back and forth with Jenny and the Doctor's office, Jenny and I wound up at the Emergency room.

It was the worst pain I had ever experienced and it was just there. It didn't come and go or anything. My shoulder, my upper arm, my back and up into my neck. I couldn't do anything to relieve it.

They gave me some of what they said was the strongest stuff they had and, after a while, I got to a point I could sit still and manage and, mostly, was just drugged stupid. They checked for a blood clot and did an X-Ray to check for damage but found nothing.

Eventually they sent me home and told me to visit my Orthopedic surgeon the next day -- today. I saw him this afternoon and he said that I just got into a situation where everything was swelling up and was putting pressure on nerves and causing some pretty severe pain. Sounds simple. He gave me more drugs to manage the pain, drugs to help me sleep and told me to keep ice on it as much as possible to keep the swelling down.

On the way home my ENT called with Biopsy results. As expected, it's positive. Squamous Cell. Not the best cancer to get but certainly not the worst. They've referred me to Dr. Terance Tsue at KU Med Center and I have an appointment with him on Thursday, Sept 18 and a PET Scan and Chest CT Scan the day before.

Waiting and not knowing is the worst part. Hopefully Thursday we'll get the rest of the answers about what we're dealing with and what the treatment plan is going forward.

Scan Results

2008-09-10T22:38:00.000-05:00

Visited the ENT today to go over the results of the MRI and CT Scan from Monday. Actually good news there. It looks like there's minimal, if any, growth into the soft tissue of the throat and mouth. This would have been a huge complicator if there were much growth there.

He numbed up my throat, got out a pair of scissors and cut a couple of pieces of the tonsil out to use for a biopsy. He said there's no reason we can't hold out hope, but he's pretty confident the biopsy is going to come back positive. We're keeping our fingers crossed but I think the real reason for the biopsy is to determine the type of cancer rather than if it's there or not.

Reality is starting to sink in.

The Scans

2008-09-08T22:34:00.000-05:00

Had my MRI and CT Scans this afternoon. Afterward I hung around and got copies of the films to hand deliver to the Doctor's office. I also took a copy of the April MRI I had of my neck when they thought my shoulder problems might be a nerve problem in the neck. They weren't scanning my tonsils but they should show up and give the doctor something to compare to.

The Doctor's office called the house late this afternoon and scheduled an appointment for Wednesday morning to review the scan and to extract some of the tonsil for a biopsy.

The day it begins

2008-09-04T22:16:00.000-05:00

A BRIEF history of how we got to where we are.

After battling a sinus infection most of the summer, I thought the congestion in the back of my throat was the lingering affects of the infection. Finally in early-to-mid August I started thinking maybe it was something else so I called the ENT for an appointment. With shoulder surgery scheduled for August 29th I opted for the September 4th appointment so I could go while I was already off work from the surgery.

So today my ENT showed me what I can't believe I hadn't already seen. My left tonsil was pretty big. After sticking things in my nose and down my throat, including his hands, he told me he wouldn't know until he had a biopsy but he was pretty confident this was a cancerous growth.

HOLY CRAP! Not what I was expecting out of the appointment. He scheduled an appointment for an MRI and a CT Scan on my throat/neck on Monday to see where it has and hasn't grown.

Jenny and I aren't sure what to think. Scared to death, of course, but we know so little at this point.